Below are the 20 most recent journal entries recorded in Ali's LiveJournal:

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Tuesday, May 29th, 2012
10:46 pm	Week 13--evaluation week! This week is evaluation week, which means no chemo--but he did have to have an exam, a chest CT scan, and an MRI of his orbital area, the lower half of his face, and his neck. The exam was scheduled for 11 a.m., and the CT for 12:45, and the MRI after that. Since he was going to be under anesthesia, that meant no food after midnight on Monday, and no liquids after 10 a.m. or so. So, Jonas was very sad that he couldn't have breakfast. He did have some water with a dash of lemon juice tossed in right at the end of the approved time. He kept telling me that peanut butter and jelly sandwiches weren't food--they're dinner. I'd told him that he could have dinner today, but not breakfast or lunch. He was very persistent in pointing out foods and drinks that were "dinner" and therefore acceptable for him to eat now. Poor kiddo. I spent the morning doing work, and Jonas played Legos for a bit, then on the computer. I was able to finish up most of what I needed to do in time to chat with him and collect our stuff before heading to the hospital. When we got there, Jonas wasn't in a talkative mood--he was still very grumpy about not getting to eat or drink anything. However, Charlie the therapy dog was there, and Jonas had fun playing with her and stepping on the new colored dots on the floor that had some sort of colored liquid in them that moved around and changed color as you step on them. He got his vitals taken by Kathy, and played a little bit of Mario Kart with me in the exam room (Sheri set it up [side note, I'm going to pay attention to how she spells her name next time. I keep changing how I spell it!] for him.). He wasn't happy about getting his port accessed, and Kathy says she'll try numbing it even more next time by using a piece of ice, since he says it hurts, even with the EMLA cream on it. After she took his blood and got him all ready, Dr. Bob came in to give Jonas his exam. It looks like Jonas has a cold sore, and apparently that's really bad for people with compromised immune systems, so we have a medication he gets to take 5 times a day for most of the next week. Interestingly, Jonas turned down a foot massage today! He said, "No, thanks, that's just for other days." :P He also has a sore (maybe a splinter?) on his little toe, so I need to give him a bath every night this week and soak his foot before patting it dry and putting antibiotic ointment on it. We don't need extra ways for germs to get in! After his exam, Jonas played for a few more minutes with Charlie. Kathy told me that the MRI people requested that we try to have Jonas do the CT scan while awake, so he'd be under anesthesia for less time (the CT scan would only be about 5 minutes, the MRI would be closer to an hour and a half), and so he wouldn't have to go from the CT scan area to the MRI area under anesthesia (no real easy way to get from one to the other with the bed and monitors and such needed, apparently). I said we'd give it a shot, and then Charlie and her owner showed us where the CT scanning place was. Charlie doesn't like elevators, but she tried really hard and Jonas was glad she was there (we had to go on several elevators, and walked across to the hospital on the skywalk). When we got there, we got Jonas signed in, and asked the person to let us wait in a different waiting area (the CT scan waiting room is shared with Urgent Care, and Dr. Bob and Kathy didn't really want Jonas around that many sick people if we could help it). She did let us, and we waited for Jonas's turn in the CT scanner. After a few minutes, they came and got us, and we headed back to the scanning room. I left my stuff in their control room, and they let me stay in the room with Jonas--I just had to wear a big lead-filled smock. Jonas was a champ. They laid him on the table, and had him put his hands on his head. They connected a thing of contrast dye up to his port, and explained that he'd have to stay really still. The CT scanner technician told him all about the machine, and told him he'd need to hold his breath for a little bit when they told him to. Jonas was telling her that he likes CT scanners because they take pictures of your insides. He thought it was neat that you go through a "doughnut" CT scanner. He was very obedient--he stayed perfectly still, held his breath when asked over the speaker, and watched the machine speed up and slow down again. The tech told him when she was putting the contrast dye in, and warned him that it might make his tummy feel warm for a few minutes after it went in. When Jonas was done, he told her "I like this CT scanner, but your medicine tastes REALLY yucky!" (Apparently, some people say it tastes like you're chewing on a tin can). Then he asked more questions about the machine, the table, the machine that injects the dye, the IV holders, where the lead smock was supposed to hang up, and about the buttons on the CT scanner. Then he asked her about the computers in the control room area. She kindly sat him on her lap and showed him some of the pictures of his insides. She showed him his liver and kidneys, his lungs, his heart, where his port was, etc. She also listened patiently as he asked various questions about things on her screen, how they worked, and by the way, did she know there was another CT scanner right there, on the other side?! And there was another person in there being scanned! He thought it was just amazing that there were TWO CT scanners. Right there! Across from each other through the control room! :) He was also pleased when they gave him three pencils for being such a good patient. He was a bit sad that he had two with yellow erasers, and one with a white one a little later, but still pleased with his new pencils. The tech told me that they very rarely get a three-year-old in there that does such a good job while awake. Go Jonas! Impressing more people, every time. :) After Jonas was done exploring the control room, the tech led us over to the MRI area, where I signed Jonas in. We played Angry Birds on my Kindle for a few minutes, then Ellen, a nurse in that department, came to get us and get Jonas ready. She said she was very happy that Jonas had done so well in the CT scan--she and the anesthesiologist and Kathy all thought Jonas could do it, but the CT people weren't so sure. They're now believers in Jonas's awesomeness, though, according to Ellen. :D Dr. Groshek, the anesthesiologist, had actually worked with Jonas on one of our first trips, and remembered us. He was really nice. It worked out really well that Jonas had been awake for the CT scan, because it was almost an hour after the scan before they were ready to do the MRI! As a matter of fact, Jonas got pretty tired, and fell asleep in my lap while we were waiting. I carried him over to the room, where Ellen took him from me (I'm not allowed in that room). He woke up as they got him ready for the anesthesia (I was able to watch from the doorway), but then he was out like a light again. The nurse had me go back to the waiting room while she finished up helping get Jonas prepped, then she showed me to the family waiting room for people waiting for patients to get out of surgery. I ate the lunch I'd brought along, then tried to get some work done. I did get some done, but other bits I couldn't finish until I was in front of my home computer. When I'd exhausted the bit I was able to do, I read, mostly. A very long time later (he'd gone in just after two p.m., and they called me to come to the recovery area at 4:15 or so), he was ready. I wandered the halls a bit trying to decipher the map I'd been given, but I eventually figured it out and made it to Jonas's bedside. Apparently he'd stirred a bit, but was just sleeping at that point(sounds like his normal pattern, at this point!). He didn't really wake up (even with me talking at him/tickling him every so often) until just after 6 p.m.). Before we left, Dr. Bob and Kathy called. They were surprised to hear that Jonas had just woken up! (Someone from IV services came to take the needle out of Jonas's port). They said Jonas's counts were really good, but that they might drop, so still watch for fevers, and try to convince him not to bonk his head this week... If his counts drop too much, it'll delay his chemo AND the radiation, so we really want him to stay healthy! Dr. Bob also called in a prescription for the cold sore medicine (yay for trying to remember to give it to him 5 times a day!:P When I said, "okay" to Dr. Bob, about the amount of times Jonas would need to take it every day, he teased me that I might not be saying "okay" so casually after several days of it. I joked back that I'd been saying "okay" to all kinds of random things lately: "Okay, let's shoot bone growth stunting radiation into his head," "okay, let's pour poison in him every week," "sure, let's remember to give him a medicine twice a day, but only on weekends." :P I figure adding one more random medication won't be too difficult.) They also got our appointment set for next Monday's chemo (note to self, it's at 9 a.m.). ANNNNNNNNNND, they'd already looked at the CT scan and the MRI. Apparently there are no nodules on the lungs (always a plus, and there might have been if the treatment wasn't working, apparently?), and there's no sign of the tumor in the MRI!!!!!! The treatment is working! Unfortunately, Jonas still has to do the radiation and the rest of the chemotherapy to get rid of remaining microscopic disease and to kill it deader than dead so it (hopefully) will never come back. BUT! All this terrible stuff we're putting him through is working and healing him! Hurray! I may be a bit excited. :) Here's hoping it continues to work and he can come out the other side healthy, whole, and cancer free. So far, his chances are looking really good, which just takes a weight off my heart. I know things can still go wrong, or long term problems can crop up, or it could come back, but for now, I'm just going to rejoice in the fact that it's working. Before we left the hospital, Jonas ended up with another cute lion doll, and the IV specialist gave him a little lion doll, too. Jonas really liked that. The nurse also called for the indoor shuttle people to give us a ride over to our car (and really, he drove us all the way to our car door from the recovery room. Awesome!). They have two of them, and they're little, highly maneuverable golf carts, basically. Our driver was Kris, and he was fun and made the cart drive a little "crazy" for Jonas down the more deserted hallways. He also gave Jonas a pinwheel to play with as we rode along. After we got to the car, we headed over to Walmart to collect Jonas's medicine. Then, home! We said hi to everyone, then got some food. Jonas wanted cereal because "I didn't get breakfast yet, and Brenna did. I need to eat breakfast!" So, he ate a bowl of cereal, and some watermelon. Then, it was bedtime, though he didn't end up sleeping until almost 9:30 (understandable when he was already asleep from about 1:45 to 6 or so!). Chris helped me get the kids into bed, then went out to teach with the missionaries. I used the time to finish the work I hadn't been able to in the hospital. Overall, a long, but a good day. It's working! It's working! It's working! :) (2 Comments |Comment on this)
Tuesday, May 22nd, 2012
11:09 pm	Radiation planning day--making the mask and taking a CT scan. Yesterday was a pretty long day. Jonas was allowed to have one piece of toast for breakfast, as long as it was before 6 a.m. Lucky for him, he woke up at 5:30. So, I went down and made his toast and water for him. After that, he was allowed to have clear liquids until 11 (but he just had a bit of water and that's it). Chris was able to give Jonas a blessing before he went to work, so that was nice. Later, Chris's dad took Brenna to school, and I tried to get a bit of work done. Chris's dad was also kind enough to do my grocery shopping for me for the week. He's so awesome. :) Then, Jonas and I hung out together a bit before it was time to head to the hospital. We got there right before 11. Jonas kept wanting a snack, or some water, but I had to keep telling him no. :( Poor kiddo. I hate that part! We hung out in Kidtown for a bit, and Jonas had fun running out and hopping on the circles that are part of the new floor (the workers were adding the last two yesterday). Then, it was time for Kathy to take Jonas's vitals. At first, we were thinking he'd just get a finger poke, but Kathy ended up needing to access Jonas's port so that the anesthesiologist could use it for putting Jonas out for his procedures. Jonas wasn't particularly pleased about that... He did get to wait an hour before getting poked, though, as I didn't realize they'd be using his port, so Kathy needed to put some EMLA cream on him and wait for it to take effect. But, that meant more time in Kidtown for Jonas, so he didn't mind. :) Interestingly, Jonas can get the anesthesia through his port because he has a power port. The older model of his port can potentially blow out if used for things like anesthesia, so people with those have to get an IV in their hand or arm for anesthesia, where Jonas can just go through his reinforced port. He also got his exam from Dr. Bob, which went well. After Jonas got his needle in, and his blood drawn, he got to help Kathy send his blood to the lab through the tube system. Then we waited for a bit more in Kidtown (Jonas alternated between "being a crazy driver" on the car game, having me play "Ms. Pacman," and playing "castle" with the moveable mats). When the people downstairs were ready for us, we headed down. We didn't have to wait long before we were taken back to meet the anesthesiologist who would be working with Jonas that day (Dr. Burelbach). He was pretty nice. He went over the risks of anesthesia and chatted with us for a few minutes, and talked about what we'd be doing. I helped Jonas into a hospital pj top, and Collin stopped by to say hi, which was really nice of him. Then it was time to send Jonas off to sleepy space. We wheeled him over to the room where they'd be doing the CT scan, and the anesthesiologist gave him something to make him loopy (sadly, before the radiation technicians were able to take a picture that they'll use to let all the people who will be working with Jonas know what he looks like, so he looks really spaced out in the picture. He made a valiant effort to smile, though.). Then they wheeled him in to the room. I was able to stand by him while they started to put him to sleep. I stepped away to start filling out the consent forms, but Jonas started getting scared, so I paused that to come and be by him. He kept asking questions and struggling to stay awake (Dr. Conway came in and was getting ready, and Jonas asked him if he could get a picture from the CT scan, because he wanted to know what the inside of his head looked like. Dr. Conway promised he'd print a picture out for him). But finally, the medicines did their job and he was out. I went over and finished signing the consent forms. Originally, the radiation techs said I could sit out of the way and watch, but the anesthesiologist nixed that (I was surprised that this made me almost cry--I think it was because I was told I could stay, then had that taken away. It wouldn't have bothered me if they just hadn't given me the option in the first place...). Oh, well. I think it depends on the anesthesiologist, whether you're allowed to watch or not. So maybe there'll be a different one who will let me watch another time. At any rate, a nurse named Ginger took me over to a little waiting area that was right across the hall from the CT scanner room (I think it's where the adult patients get gowned up for their procedures), and did the little education spiel they give, with lots of papers and booklets and such. She went through it all with me, then just chatted with me until Jonas was done, which I appreciated very much. She also gave me a parking pass that lets me park right next to the building, and they set his first treatment for June 5th--Brenna's last day of school. His appointment is at 7:15 a.m. (hurray!), and we need to be there 1/2 an hour early for anesthesia (nice to be so early, but also, ouch! that's early!) One of the radiation techs came to show me the mask they made for Jonas's head--it's a full plastic head mask sculpted to his face and extending a lot back--they also make a custom neck rest for him, I believe. His has the mouth opened up, in case they need to insert a breathing tube. It looks like a creepy 3-D version of Edvard Munch's "The Scream." Jonas actually gets to keep it after his treatment is over, so I'll take a picture then. It is designed to be form fitting to keep the head positioned exactly the same every day, so it looks pretty claustrophobia-inducing. Good thing he's asleep for it! He'll probably have marker dots (instead of the tiny tattoo dots) put on him to help with positioning, too, and we'll have to cover them up when he bathes so they don't wash away. They're pretty important! After the mask was made, they did the CT scan. When Jonas was headed up to recovery, Dr. Conway stopped by with a picture for Jonas. He told me he cheated a bit, because the picture was from his original PET scan, rather than the CT scan, but I didn't think Jonas would notice or care. He was just excited to have a picture of the inside of his head! I was allowed to follow Jonas up to the 5th floor while he went to the outpatient surgical recovery room, then I sat out in the waiting room and made a few phone calls to let people know how things were going. Pretty soon, I was allowed back, since Jonas was the only one in there. One of the nurses (Lynne, I think?) had been there after Jonas had his initial surgery (or maybe it was when we came to find out what was going on. I don't remember). It was good to see her again. She's really nice. Jonas just wasn't waking up, though (just exhausted, I think), and we were eventually moved to another little recovery room. Jonas ended up sleeping for close to three hours, I think. When we were moved into the little room, a nurse who'd spotted us in the hall came to say hi. She was one of the people who helped out the very first time when we came in to see if he had a raisin in his nose. She said she just had to come see Jonas after she saw us in the hall, because she just fell in love with him the very first time she met him. She told me how he'd told her he'd put a raisin up his nose, and about how he takes placebo medicine. She said he was the cutest, smartest little boy she'd ever met, and she prays for him every day. I thought it was incredibly sweet of her to come tell me that, and I think it's really amazing to see how much Jonas affects pretty much everyone he meets! Jonas finally woke up at about 4:30, and he got to take a wheelchair ride down to the oncology clinic so Kathy could take out his needle (the IV specialist people didn't want the nurses upstairs doing it, because they don't do it very often and I guess aren't up to date on their certification for taking them out). It worked out, because I needed to tell Kathy and Dr. Bob that we need a new prescription for the Bactrum that Jonas takes on the weekends. Also, we have our testing scheduled for next week. Another hungry day--we have his exam with Dr. Bob at 11, then he has to have anesthesia again before he gets an MRI and another CT scan (I guess that's one that goes down to his chest, rather than the one being used for positioning purposes). These are evaluation tests, to see if the treatments are working. Jonas's numbers are okay, though his platelets are dropping and will probably continue to drop, so any big bumps this week will earn him an extra trip to the clinic. After we got all that taken care of, we were able to head home for dinner. Chris's dad made grilled cheese sandwiches and tomato soup. Yum! Luckily, Jonas didn't have too hard of a time falling asleep, even with the super long nap due to the anesthesia. This particular day was pretty hard for me. Mostly because of the unknown again, I think. Chemo was pretty scary, at first. In fact, for the first month after Jonas's diagnosis--through all the testing and the first week or so of chemo-- my subconscious was so kind as to give me nightmares every night. I got to watch Jonas die every night--usually from something I either did, or didn't do. Not exactly conducive to restful sleep, in case you were wondering.., but now chemo's part of our routine, and I know how well Jonas tolerates it (remarkably well, by the way). Radiation is still a big unknown in terms of how it will affect him. It's a bit daunting to be given a bunch of papers with side-effects on it, with the ones that are likely and or possible, given where Jonas's treatment will be focused, marked with little "x"s. He may have none of the symptoms, he may have some, all, or ones not marked on the paper. I'm hoping for none to few, personally... For short-term effects, they listed fatigue and hair loss (okay, not so bad--he gets those from chemo anyway. I'd like to stick with those, please!), stuffy nose, sore throat, trouble swallowing, reduced sense of taste, less saliva, and having trouble eating enough. He will most likely get the great majority of those. Ginger was telling me that eating soft foods through a straw can help, because it gets most of the food back past the tastebuds, so it can alleviate some of the yucky taste food will most likely have for him for a while. I foresee the need to be super creative with foods for a while... I may try peanut butter and banana smoothies, since peanut butter and bread may be difficult for him to swallow in sandwich form for a while. Apparently, it will be a gradual process with seeing the side-effects--usually after a week or two of treatment. Jonas has 20 days of this. The long term possible side-effects are even more daunting: Brain injury, decreased vision, skin may thicken or develop wounds (ulcers), dry mouth, reduced sense of taste [you mean, food may never taste good to him again? Just great....], bone injury [this one is very likely. His cheekbones and nasal area will probably be stunted in growth. I asked the radiation oncologist if there's anything that can be used to help offset the problems and he said no, that there's nothing to prevent it/help reduce the problem. :(], Dental decay [he will have to take super duper excellent care of his teeth for the rest of his life], and, rarely, spinal cord injury or other cancers may occur when people get radiation therapy. The big booklet says he will be very susceptible to skin cancer for the rest of his life [and there's already a family history of it], and he may suffer a kind of sunburn like burn in the treatment area. He can't go swimming at all (that's not so bad--swimming pools already have too many germs for him right now, anyway). I guess it's just really sobering to me to know that the things we're doing to save Jonas's life are so toxic to him. I used to think I liked change, but I've come to realize that I only like change that I have some measure of control over or say in. I hate feeling helpless. I have many type-A characteristics, and I keep having major things be completely out of my control. This really, really stinks. I know I'm whining right now, but mostly, I do okay. I know the Lord is watching out for Jonas. There are literally hundreds, if not thousands, of people praying for Jonas, thinking of him, and rooting for him. We have wonderful friends and family, a wonderfully supportive ward, and we're in one of the best places you possibly can be if you are a little kid with cancer. But I'm so not good at giving it all up to the Lord all the time. I do okay, and I really do feel like things will be okay in the end, no matter what, but sometimes it's just really hard. I know I'll probably feel better once treatment starts, since it won't be the scary unknown anymore. But for right now, I just keep praying that he'll fly through this like he has with everything else, that I'll continue to know how to best support him and help him get through all these hard things, and that it will all make a difference. I just want my sweet little boy to be okay. :/ (2 Comments |Comment on this)
9:22 pm	Saturday was recital day! On Saturday, the kids had their dance recital. Our morning was spent doing chores around the house. After lunch, I started getting the kids ready (their recital was at 2 p.m.). Brenna looked adorable in her polka dot outfit, and Jonas was very dapper in his vest and purple bowtie. I got to wear all black, so that was nice :) Ben, the other little boy in Jonas's class, also looked super cute in his little bowtie. (Poor Ben was napping until about five minutes before we went on stage!). The five of us piled into the van and made it over to Viterbo right on time. Brenna ran in and sat with her class, and Jonas and I sat with the other mommy and me people. We were number 6, and Brenna was right before the end of the recital. Chris and his dad were up in the balcony. It sounds like they had a good view, so that's good. After our Mommy and Me class performed, we were allowed to find seats in the audience to watch as much of the show as the kids would tolerate (as long as we left five numbers before the end, because we were supposed to be in the finale, too). Jonas was good for about 5 more dances, then he was done, so we went back to the waiting area and hung out. Sadly, Jonas tried to run to me at one point and slipped on a coloring page another child left on the floor. He fell straight back and smashed the back of his head on the floor. :( It raised quite the knot. He was lucky his numbers were pretty high--if he does that this week, we get to go in to the hospital for a check because his platelets are dropping. He was pretty well behaved, otherwise, and was good about being quiet when it was Brenna's turn to perform (we got to go watch from the wings. She did a fantastic job. I'm so proud of her! :) Both kids did well with the finale, too, though Jonas insisted that I had to come out with him. Raquel bought a copy of the recital dvd, which will come in August, so it will be fun to see when it comes (she's so awesome--she couldn't make it to the recital, so she bought the dvd!) After the recital, we met up with Chris and his dad (they found Brenna at her pick up point and brought her over). Grandpa bought each of the kids flowers for their performances (Brenna reeeeeeeeeeeeeeally wanted flowers), which they were so thrilled with. The flowers are together in a vase on our table right now, and the kids are happy every time they see them. It was another great end to the dance year. :) Brenna's excited that I've already signed her up for the fall for the next class up (they do ballet and a bit of intro to jazz in the next class). I'm waiting until fall to decide about Jonas. He'll be in the Tippy Toes age group. I'm not sure how he'll be feeling then (it's right toward the end/right after the end of his treatment), or whether he'll want to dance without me. So, I figure I'll take him the first day, if he's feeling up to it, and see how it goes. If he likes it, I'll sign him up then. :) We had Hmong's Golden Eggrolls for dinner (YUM!!!!!!!!!!!!!!!!!!!). A very successful day. (Comment on this)
Friday, May 18th, 2012
11:37 pm	The initial appointment with the radiation oncologist We had the initial appointment with the radiation oncologist at 1:45 p.m. today. We got there a few minutes early, checked in, and waited with Jonas. As they called us back, Jonas was nervous, but we kept reassuring him that they weren't going to poke him today--just talk, and he calmed down. After the nurse got us settled in the room, we waited some more, and listened to Jonas chatter and spin on the doctor's stool. Then, Dr. Conway, and an intern/resident (finishing up year one of five) Dr. Stish (I think), came in. They explained a bit about what is going to happen with the radiation--we will go in on Monday, after Jonas's exam with Dr.Bob, and they'll sedate him and use some plastic that they'll have softened in water to mold a sort of mask to his face. That will be used to position him precisely and correctly every day. While he's under, they'll also do a CT scan to help them precisely focus the radiation as well. Unfortunately, that appointment isn't until 1 on Monday, so Jonas will be very hungry that day. The doctor went over some common side effects--swelling in the affected site, which can give him a sore throat, difficulty hearing (that's why the tubes were put in--to help with that), a stuffy nose, and messed up taste buds (food will either taste really "off" or he won't be able to taste things much at all). It can make him extra tired and cause hair loss (heh. Not an issue at the moment...:P). It will likely affect the bone growth of his cheekbones, nose and other bones in that area, too, and could potentially cause secondary cancers. Exciting stuff, let me tell you. Sigh. Jonas was awesome during the appointment, as always. At one point, the doctor asked Chris and me if Jonas was pretty healthy, and Jonas piped up, very matter-of-factly, "No, I have cancer." before elaborating that it was in his nose and that it was called Rhabdomyosarcoma. I think the doctor and intern were surprised at his answer. :P At one point, the doctor put Jonas up on the table so he could look in his ears, nose, and mouth, and tap on his stomach, listen to his breathing, and test his reflexes. When Jonas sat on the table, he said, "You're not going to poke me, right?" He was assured that he wouldn't get poked. Then he said, "That's what Kathy does. She pokes me." Then Dr. Conway gave him a ride up and down on the table--it goes pretty high! When Dr. Conway grabbed the first tool, Jonas was really excited! "Hey! Hey, Dr. Bob has that tool, too!" Dr. Conway agreed, and asked Jonas to tilt his head so he could look in his ears. Jonas did so, saying "Dr. Bob always tells me to put my head like this!" and he tilted his head the other way when it was time without prompting, chatting about Dr. Bob. Then the doctor changed tools and Jonas said, "Wow! What's that tool for?" and listened avidly to the answer, then let the doctor look up his nose. Then the doctor opened up a tongue depressor and Jonas said, "That's a tongue presser! I like those. But I don't like when they press on my tongue. They make me go *here he made a gagging sound*" Then he opened up and let the doctor look at his teeth (oh, and teeth can be affected by the radiation, too, so we have to do an extra super job taking care of them...). He was very good and following all the directions. After Dr. Conway was done, he showed Jonas how to operate the table and let him raise it all the way up. When it was time to lower it, Jonas was having trouble putting pressure on the right spot, so he moved the foot pedal a little farther from the bed. He looked up and said, "This is better, because when I'm too close, the bed could hit my head on the way down, and then I'd have an owie. That's not safe. But I can do it here!" and he did so. After we chatted for a few more minutes with the doctor (he told us that they can get the radiation accuracy to within a millimeter of spot on. I also liked that he joked that if the appointments aren't in the morning, he'll have the anesthesiologists keep him overnight, so they can listen to how hungry he is. :P), he showed us the radiation machine (which is actually really cool looking). It's this bed that can move up down, or slightly to either side, maybe even forward and backward. Then there's the huge machine and it spins up, down, and around to precisely administer the electronically generated radiation. There are cameras in the room so they can monitor him from the control area right outside the door, since they can't be in there during the actual test. They'll have the anesthesiologist right outside watching to make sure he's okay and stable. The radiation tech showed Jonas how the buttons on the machines worked and was very kind to him. After we saw that machine, we went over and saw the CT machine Jonas will be in on Monday, and the water bath used to soften the plastic. We also saw one of the plastic forms they use to make them. It looks kind of like a head shaped piece of plastic canvas, to me. After that, we said good bye to the doctors. Jonas said, "See you later! I'll see you next time, if you're coming!" Dr. Conway replied that he would definitely be there. :) I was sad that we probably won't get Dr. Jeffries as our anesthesiologist at all, but I guess the guy that Dr. Conway is pulling in is the department head--so hopefully that means he's super awesome! :) Jonas was pretty tired today, and grumpy, but he did great while we were out and about. Now Monday will be more stressful than I'd anticipated, but first, I have to get Jonas through the dance recital dance tomorrow. :) (Comment on this)
Wednesday, May 16th, 2012
10:56 pm	Last half of Tues and being released from the hospital, along with the rest of Wednesday Well, Jonas ended up having to stay another night. Mostly because Dr. Bob prefers if his patients stay at least 24 hours after taking Cyotoxin, to better hydrate them, and that would put Jonas's discharge time at about 11 p.m., after the full time and time to get him out of there. And, he would have to just come back in the morning to get his Neulasta shot. So, instead, he stayed the extra night, got his shot in the morning, and was able to just come home after that. So, Chris and I switched places at about 2. He and Jonas hung out and played Nintendo DS together and watched Power Rangers (Chris said he could feel his brain start to atrophy, but Jonas enjoyed it. :P) and cuddled together. Also, two therapy dogs came to visit, and so did the Bakers. Dr. Bob came by while Chris was there, too. We have an appointment with the pediatric radiation oncologist on Friday at 1:45 to discuss his radiation treatment, and Jonas has an exam with Dr. Bob next Monday. Then we'll schedule his tests for the next week and go from there! Apparently, Dr. Bob told Chris that he was very impressed with Jonas's vocabulary and articulation, and that he thinks he'll do something involving language skills someday, like a politician (Oh, please, no! I hate politicians! :P). While Chris and Jonas hung out, I went to go get Brenna. I chatted with Mrs. Rox briefly, then Brenna and I ran home to get ready for the dress rehearsal. I dressed in my clothes, just in case, and got Brenna all dressed and ready, including getting her hair into a bun and putting on garish stage makeup. :P Then, it was off to Viterbo. We got there with a few minutes to spare, and Brenna even got to see Belle for a bit. I chatted with Belle's mom and dad, and got the bowtie and vest to Misty for her son Ben to wear. I had brought my video camera and my regular camera, but alas, the video camera was almost battery dead. Happily, my regular camera also takes video! So, when it was Brenna's turn, I videotaped her performance. My friend Vanessa took a few still pictures for me. :) Then, when her daughter performed, I videotaped it for her. Fun! I wanted to video tape the play lady's grandkid, but I never did find out which class she was in. :/ Here's Brenna's rehearsal dance: http://s24.photobucket.com/albums/c41/brennalarpista/?action=view¤t=DSCN2226.mp4 It was fun to watch her dance. She's so darn cute! I don't know if I'll get a video of Jonas or not. Maybe I'll be able to find a friend to videotape Jonas and me. Normally, I'd have Brenna do it, but she won't be there tomorrow when we practice. Ah, well. Before we left, Misty introduced me to the photographer that is doing the photography for the shows. Apparently, she's involved with a book project about dance therapy for cancer patients, and Jonas may end up being one of the pictures in the book. Nifty! After everyone was done and they'd practiced the finale, we headed home and got changed back into normal clothes. There was a "Fine Art Night" at the school, with bouncy houses from 4 to 6, then artwork in the halls from the various classes, and a strings concert for the 5th(?) graders. Brenna reeeeeeeeeeeeeeeeeeeeeally wanted to go, so we said hi and goodbye to Chris's dad, then headed over to the school. Brenna met up with her friend Max from school and they ran around together the whole time going on the different bouncy things. It was cute. They'd hold hands as they'd run from one to the other. I had a nice time talking with Max's mom. After the bouncy house time was up, we looked at some of the artwork in the school, then headed home to eat dinner with Chris's dad. A kind sister from the ward brought us dinner--spaghetti bake, fresh bread, and chocolate cake. Yum! We also had fruit salad. After dinner, we chatted for a bit while Brenna put together a foam mat hopscotch set, then Brenna "helped" Grandpa by eating lots of pork meat as he shredded it. :P Then I got to chat with my friend Julia for a bit on the phone (she'd stopped by briefly in the morning and talked to Chris and given the kids some sweet presents [such as the foam mat hopscotch set.:)] and cookies), then I got to put Brenna to bed. After that, I repacked my bags, said good bye to Chris's dad, and headed back to the hospital. I chatted with Chris for a few minutes, then he headed home and I hung out with Jonas. Jonas was very tired, but we read an interactive book together, watched the rest of his Power Rangers DVD, and then cuddled until he fell asleep. I got to sleep much earlier, but had disturbing dreams. :( And I had to get up a bunch to help with Jonas (poor kid was wet a bunch of times--lots of fluids plus inadequate pullups meant several sponge baths and changes of clothes). He was up and chipper at about 6 a.m., though! :) He ate a few peaches for breakfast, and a few bites of french toast, and I got all our things packed up. He also got another washcloth bath and I got dressed and ready to go. At about 8, Lynda came and put on the EMLA cream so Jonas could get his Neulasta shot at 9. Jonas played his DS and I sat next to him and chatted with him while I played on my Kindle. Then the dreaded shot time arrived. Jonas started to get really upset and was trying to explain to Lynda why he didn't like the shot and that it hurt and wouldn't help him get better, so please don't poke him with the Neulasta shot today. I think it was really hard on poor Lynda. I think she really likes Jonas and is impressed by him, and I think it was hard to have to still give him the shot when he'd tried so hard to explain why it wasn't needed. :( Poor boy. The lady I talked to the other night who had also taken Neulasta shots said it burned, too, so that's sad. Then, just a few minutes later, once Jonas calmed down, Lynda came back. She asked Jonas if she could have a hug to make up, and he told her "No, I'm still sad about the Neulasta shot." At least he was honest? :P A few minutes after that, Lynda let me know that we could go after we got the needle out of Jonas's port and printed out the discharge papers. She asked me when I wanted her to do it, mentioning that she hadn't yet recovered from doing the last shot. I told her we might as well do it and get it over with. So, she just got the needle out as quickly and gently as she could. Jonas cried, but he was able to calm down after just a few seconds. Such a brave boy! I got him dressed, and he showed off his "One tough cookie" shirt to Lynda. Then, Jonas didn't want to wait in the room while our discharge papers were printed. He didn't want to go to the playroom either--he wanted to put on his Thomas backpack and walk around the floor. So, Lynda showed Jonas where they put the IV machines after a patient is unhooked, then she let him help send his token sheet over to the clinic through the pneumatic tube system. Barb the playlady was there, and he was explaining to her and Anita from housekeeping about how the system works. :D He was very excited about it. He loved getting to push the button to send off the tube--He let Lynda pick him up so he could reach it. And Lynda was so sweet. She sent a message to someone to send back a tube for Jonas. So he stood there and waited and one showed up! Inside was a smiley face drawing, just for him. :) She was also very kind and told me again that she's seen a looooooooooooooooooooooooooooooot of children, being a pediatric nurse, and she's never met one like Jonas before. She said she thinks he's amazing, and that he could only be that amazing because he had wonderful parents. I thought that was very sweet and nice of her to say. She also told me that the nurses love taking care of us, and while they're sad that we have to come, they're always happy to see us. I think the nurses get a kick out of his questions and chatter. Jonas even gave Lynda a hug (he said it was a "hospital hug" since he only likes Daddy hugs, otherwise, right now.). Sarah, his very favorite CNA, was there today, and he got to go find the "train wagon" with her to go to the car. He was very excited and had fun going off with her. When they came back and we loaded our stuff into it (for the first time ever I left with one fewer bag than the first day I came in!), Lynda pointed out the drink holders to Jonas. She said, "Look, Jonas; do you know what those are for? They're for holding drinks!" He gave her a funny look and said, "No, those are for water cups, not drinks!" Then he explained further. "If you put drinks in there, they'll just splash through! You need to put cups in first, then you can have a drink in there!" all in a "you people are so weird" tone of voice. :P Then he waved good bye to everyone and said "See you later!" and made Sarah run through the halls so I wouldn't catch them. :) When we got to the car, he gave Sarah a big hug before we left. Since we don't have any more scheduled stays, we promised we'd come visit after radiation is finished. At home, Jonas was excited when Chris reminded him that Diablo 3 is now out, and they played for a bit. He didn't eat anything all day, and was very tired and a bit out of sorts. He did like seeing Grandpa, and we put together the ABC puzzles that Julia brought him yesterday. I also got some work done and planned Cub Scouts. Chris's dad was switching hotels for a few days today (the one he's in was booked for 4 days, so he'll stay at a different one those days,then go back afterward), so he went to do that and I picked up Brenna and got some needed items at the store. Then Brenna and Jonas got to play with Zana and Dale for a while before we had dinner (leftovers!). Jonas didn't eat anything then, either. And right before I left for Cub Scouts, he threw up. He refused the Zofran, though, and Chris didn't push it, since it was so close to bedtime. If he's still feeling miserable in the morning, I'll have to make him take it anyway, though, because he's too small to miss two days of food. Cub scouts was good--we did physical fitness things, and made posters. Next week we're doing cooking stuff again. Overall, a good day. I'm still tired out, though. I'm looking forward to sleeping in my own bed! (Comment on this)
Tuesday, May 15th, 2012
11:41 am	Week 11 of chemo Another Monday, another chemotherapy treatment! Chris's dad is in town, so that is nice. This time, since the regular dance class is over (one more dress rehearsal today [Tuesday], then the recital on Saturday!), Jonas and I headed in to the clinic for an appointment at 9. Jonas got to play in KidTown for a while. He also got to play with Zack (not sure how old Zack is--9 or 10, maybe?) and Riley and Colton. Jonas was excited to see them! He loves Riley and Colton--and Zack plays MarioKart with Jonas, so he loves that, too.:) Kathy got Jonas's height and weight, then went in to take his vitals, get his needle in, and draw blood for his labs. Jonas was very cute, but also very sad--he was telling her that he really just didn't like the poke. He said it's scary because it pulls his skin when it comes out and it pinches when it goes in and out. Then he implored Kathy, "Kathy, please don't poke me today. I'm scared!" He cried for a few minutes when she put it in, but calmed down pretty quickly. Poor kid. He was trying so hard to articulate why he doesn't like the needle, and still had to be poked. :( After Kathy was done, Dr. Bob came in to give Jonas his exam (all is well). I think Jonas thoroughly amuses him with his stream-of-consciousness nonstop chatter. Jonas was asking questions about one of the tools and got to play with it for a while before going back to play (he also got his foot massages from Dr. Bob--that's a must!). I also got to ask my questions. I wanted to know if the chemotherapy would make Jonas need to have all his vaccinations redone or if his body would remember (answer: bone marrow transplants mean you'd have to redo vaccinations. Chemotherapy doesn't kill all the lymphacytes(? Can't remember the word), therefore once he's done with treatment he can continue on a normal schedule (just can't have vaccines while receiving therapy, as they'd either not be very effective or could end up giving him the disease, if it was a live culture vaccine.). Good to know! Also, yes, his low counts last week did push everything back a week--next week he won't have chemotherapy, and then the next week he'll have his testing. Radiation will now start on Week 14. Also important information! A while later (while I tried to convince Jonas to drink juice, water, Sprite--anything! Jonas kept insisting that he didn't need any more to drink because "I'm really, really, really, really, really, really, really, really, really, really, really, really, really, really hydrated!"), Jonas's lab work came back--his counts were high enough for us to go to the hospital again. Hurray! Jonas played a bit more while I chatted with Riley's mom, and once Jonas's orders were put in for being admitted, we headed out to the car to move it over next to the hospital. Then we grabbed our bags and headed upstairs. They got him started on fluids and we got him some lunch (pb&j, quesadilla, chocolate cake, and chocolate milk. Plus two packages of graham crackers. He ate everything but the quesadilla and half the milk. Sadly, Jonas wasn't hydrated enough until 9 p.m. to start his chemo meds (all those reallys notwithstanding). So, Jonas and I played with his new quiet book (a friend of Chris's family in WA made him a "My Monster Album" book that is just amazing! I'll have to post pictures soon. Puts the one I made him to shame!), we watched Power Rangers movies, we played on my Kindle,and chatted. He also talked with his nurses, Janet and Lindsay. I managed to meet with one of the social workers here to show her the Preschool Parenting Kit from World Peace Parents. She's going to show it to another person who's in charge of what programs they partner with, so we'll see if that goes anywhere! My marketing obligations are done--at least for now. :) Then Jonas and I went into the playroom for a while. We played with the kitchen for a bit, and the trains, and then Mariah (can't remember how to spell her name) came in. She was helping out the play lady when we had our first hospital visit. Apparently, it was her last day, and she'd brought in cookies for everyone. When she heard that Jonas was there, she wanted to come see him one more time. :) So, we played the Jonas version of air hockey (sadly, the thing fell apart as they were playing), Cars 2 Monopoly, Whack-a-mole, Sorry, and Sorry Sliders, all the while listening to him chatter. :) It was a lot of fun. Then, it was getting close to dinner time, so we said goodbye to Mariah, and headed back to the room. I was fasting, because Caleb's surgery is on Wednesday, and I wanted to fast for him, so I was glad it was almost dinnertime, too! Jonas ordered fish, french fries with ketchup (he was adamant about including ketchup in the order), and 2 sugar cookies. While he was eating, Brenna, Chris, and Grandpa came to visit. Chris and his dad spent a lot of the day making and cooking different flavors of meatballs and meatloaf, and they brought me fruit salad (watermelon, strawberries, and pineapple, yum!), and meatballs with gravy. We had a nice visit, though Brenna was sad that I wasn't coming home with her. She was excited that she'd been the special helper that day, and they painted pinch pots they'd made in art class, and the teacher's going to glaze them. Fun! A short time after they left, Raquel came to play. Hurray! We had a ton of fun chatting with each other and with Jonas. We were really glad when Jonas was finally able to get his meds. He got Cyotoxin and Actinomyicin D (I know I slaughter the spelling of these things, but I don't have the patience or desire to look the words up right now. :P), and no VinCRISTINE this time. We also chatted with the new member of the housekeeping staff. She's been working here for about a week. She's really nice, and, as it turns out, she's actually had rhabdomyosarcoma herself! Crazy! So, Raquel and I chatted with her for a bit about that. Jonas actually fell asleep right before they started the chemo. Raquel and I played on my computer and chatted. Then we were looking at recipes on Pinterest and got hungry, so she went to try to get us some cheese curds and milkshakes. Alas, everything was closed except Burger King, so we got chicken tenders and Hershey's pie instead (still yummy!). We also looked at pretty clothes and funny websites together. I love Raquel. I'm so glad she was able to come play with me! Even if it means I get even less sleep than I normally do at the hospital (Thanks, Raquel! You're awesome!). Jonas did wake up soaked a couple of times (he's dry most of the time at home now, but when they pump you full of fluids and poison that makes you tired, I guess it's hard to wake up in time!). He also woke up at about 2:30 wanting to watch Power Rangers. He wasn't very happy when I said no, but he fell asleep pretty quickly, so that was good. I got a bit of rest, too, and then Jonas woke up for the day a bit before 6 a.m. He wasn't feeling so well (He said his arm hurts--not sure if he slept on it, or what--and his tummy was hurting), which was sad. We played on the iPad for a while, watched some Power Rangers and Sesame Street, and played on my Kindle (read an interactive story and watched a Youtube music video of the One Shoe Blues. We also said good bye to the night nurse, Amber, as the shift changed. We have Lynda again. When Amber asked if Jonas remembered Lynda, he said, "Yes, from the clinic!" Lynda thought it was neat that he remembered her. At a little after 8, Brett, the CNA today, took Jonas's vitals and watched him while I went to go get breakfast in the cafeteria. Jonas also got his breakfast (fruit loops and toast--he ate one piece of toast. I think his stomach is still really hurting him). I got to chat with Anita, from housekeeping, too, which was nice. I really like her. She's very kind and doesn't mind chatting with me. After Jonas and I had both eaten, we went down to the playroom for a while. Yesterday, there weren't any playladies on duty (so we lucked out that Mariah came by!), but Carol is here today, so Jonas got to play foosball and a bunch of board games again with someone other than just me. :) He was getting pretty tired, and asked to come back to the room to play his DS for a bit. On our way back to the room, Carol showed us the tubes they use to send medicine and notes and such around the hospital and Jonas got to see one get sucked up and sent away, and one come back. He thought that was really neat. When Lynda stopped by us to check on Jonas, he was telling her all about it. :) She asked him if his tummy was feeling better, and he told her "well, it's okay. But the bad news is, my arm is hurting!" (still not sure why... :( ). We took him back to the room and asked him again if he was feeling okay or if he wanted medicine for his tummy. He chose to have medicine, so Lynda got him some Benadryl. Apparently she didn't warn him when she was either putting the medicine in the IV (it was a syringe push), or when she flushed the port, because whatever it was, he could taste it and wasn't ready for it because he started gagging for a minute. Poor boy. :( He managed to hold it together though, and played his DS for a few minutes before dropping off to sleep. He also called in the CNA right before falling asleep because he wanted to know "why do you need to work so much?" and "Why do you have so many chores?" :P Brett was amused. He told him it was his job to be busy and he'd get bored and in trouble if he didn't stay busy and do his chores. About a minute later, Jonas was out cold. He's actually still sleeping as I write this. A hospital chaplain stopped by to chat--she's the one that has been following along with us and checking in on us periodically, which I appreciate. She's really nice. Charlie the therapy dog and her human tried to stop by, but Jonas was sleeping. I don't think I'll tell him that Charlie was here, because he'll be sad that he missed her! Dr. Bob has to do hematology clinic stuff this morning, so I'm not sure when he'll be in to see us. I'm still hoping to get out of here before 3, so we can make it to our dress rehearsal, but it probably won't happen. (If we're not getting out of here by 2, Chris and I will switch and I'll get Brenna from school and get her ready for the dress rehearsal. Then she at least will make it, and Jonas and I can go to the one on Thursday instead for ours. Chris is happy to take over as 1) it lets him spend time with Jonas and 2) (and probably the biggest reason) this way he won't have to figure out how to get all the fiddly bits right on her costume and do her hair and makeup! :P. Fun coincidence--Carol the play lady's granddaughter also goes to Misty's Dance Unlimited, and is performing in today's rehearsal and Saturday's performance (same age group as Brenna, different class). I'm going to try to video tape it for Carol since she's working both days and won't be able to go. So far, Jonas feels tired and sick to his stomach, but he seems otherwise good and chipper. I need to find out from Dr. Bob if we have to come in for an exam next week, even if there isn't chemo, but otherwise, I'm just hanging out and writing this! :) (Comment on this)
Tuesday, May 8th, 2012
9:42 pm	Week ten of chemo, or the chemo that didn't happen This week, we had our fantastic friend Janci with us, all the way from Utah! Yay! She was able to come to the clinic with us, and was going to help out in the hospital, as it was supposed to be a three-drug cocktail day. We got there, and everyone told Jonas how dapper he was in his clothes for the dance recital (in-class dress rehearsal), then he got to play in Kidtown for a bit. There was another, older boy--maybe 8,9, or 10 there, and he let Jonas play Wii Mario Kart with him and Cheri for a bit. Since Jonas was having so much fun on his own, I left him to it, and showed Janci around, which was fun. Then it was time for Jonas to get weighed (about 33 lbs) and measured, then get his vitals taken and his needle put in and labs drawn. Jonas still doesn't like it, but he did really well and was very brave. Next, Dr. Bob did his exam. He was teasing Jonas that he'd only give him a foot massage if he asked for it. Jonas chattered a mile a minute at him, and poor Dr. Bob had to work very hard to get a word in edgewise. Overall, Jonas looks pretty good at the moment. After the exam, it was back to Kidtown, where he played several different board games before riding around on the little police scooter thing for a while. Finally the labs came back. Unfortunately, his infection-fighting white blood cells (ANC), were too low, so instead of getting admitted and hanging out at the hospital overnight, Dr. Bob decided to give Jonas a week off this week to hopefully get the numbers needed in order to be admitted to the hospital. I'll have to ask if the next week will be nothing as well (as it was originally supposed to be), or if we'll skip straight to the testing. So, Jonas got his needle out without having had any chemotherapy--he says it pinches him when it comes out, so that's one reason he hates it, I guess. Then he got to pick out stuff with his tokens. There was a Batmobile there that I was pretty sure he'd pick, and I was right! The good news is that Chris's dad is coming into town this coming Saturday and can help take care of Brenna while I'm in the hospital with Jonas next week (I hope! I want him to be able to get the medicine and be well!). I just hope everything will do what it's supposed to and he'll be okay. (Comment on this)
9:24 pm	My fabulous weekend Friday evening was lots of fun--we watched "We Bought a Zoo" with the kids, then after they were in bed, we had a great time playing in our comedy campaign. I got extra experience points for playing my character (a Southern accent steampunk gunslinger) really cleverly (I was insulting some pirates we'd captured on the elemental plane of Pizza because they'd made some rude comments when we were stripping their clothes to use as disguises.). It was great. :) Saturday was the day I've been waiting for, for forever! Janci was coming! We spent Saturday morning doing chores--decluttering surfaces, cleaning bathrooms, vacuuming, doing laundry (all normal Saturday chores, except maybe the decluttering...). Then I needed to grab some things at the store (I managed to snap our toilet brush in half. Whoops! also, I needed a new pair of jeans), and I needed to return the Redbox movie. So, I left the kids with Chris and went and did chores. When I finished, it was time to head straight up to the airport to get Janci. The last time I'd seen Janci in person, I was six months pregnant with Jonas. It was sooooooo nice to see her and chat in person! Chris made curry for dinner on Saturday, and Janci and I took the kids over to the softball fields across the street to fly kites. The kites actually worked pretty well, but the kids had a hard time keeping them in the air if they weren't running the whole time. The kites also got caught on the fence and in a tree several times. But they had fun, and Janci and I got to hang out, so it worked for me! After a while, they got tired of flying the kites, and they found a runoff stream from a drain that went into the field. They played in it for a good 20 minutes at least--and it was a cool, grey, almost rainy day. The water wasn't particularly warm, either, but they had fun getting thoroughly soaked. Afterward, they were complaining about freezing as we walked back to the house and we had a brief lesson on consequences. :P The curry was delicious, and the kids had great fun showing off for Janci. They did their very best to talk her ears clean off during her visit (Of course, so did I...:P). After the kids went to bed, Chris, Janci, and I chatted for a bit, then Chris went upstairs and Janci and I proceeded to talk until 3 in the morning. Yikes! It was so worth the sleep deprivation, though, because it was awesome to really catch up and to talk about anything and everything with her. And, I even had something other than the couch for her to sleep on when we finally did head toward bed, because I borrowed my friend Raquel's cot. The next day was Fast and Testimony meeting at church. Chris had to leave a little before 7 in the morning for meetings. I got up and tried to get Jonas ready for church without him making *too* much noise--but it didn't really work. That kid walks like a herd of elephants! I got Brenna up and dressed and fed, too. Once Janci and the rest of us were dressed and ready, we headed to the church. Overall, it was a good service--I just felt bad because I was totally dozing in Sunday School, and as that was the last of my Family History classes, and there were five of us, including the teacher, it was very, very obvious. :( Brother Birdsel was very understanding, though. We had a quiet afternoon (well, relatively--I do live with children), and I cut out and worked on the polyhedral dice for Janci's baby (I need to hand stitch the numbers on, then sew them up still) while we chatted. Janci and I made quiche for dinner. It had roasted green beans and broccoli, caramelized onions and garlic, cheese, and egg in it. I was very pleased with how it turned out. We also made an apple pie with a crumble topping. Yum! We were both really tired, so we only stayed up until 11 that night. :P On Monday, I got the kids up and dressed and fed (Jonas had woken up early, so I gave him his DS to play. Thank you, electronic babysitter!--he ended up getting stuck at one point in his game, and went and woke Brenna up to help him--but she didn't mind, so it all worked out). I spent the early morning getting some little chores done, and creating a menu for the week. After we dropped Brenna off at school, Janci, Jonas, and I went to Walmart to get the groceries. While we were there, I found some awesome fabric that was only 75 cents a yard. Awesome! I think I'll make little shift dresses out of it. After that, it was back home to put away groceries, then off to dance class. This week was the in-class dress rehearsal for the recital. Jonas looked very dapper in his dress pants, white shirt, vest, and pink bowtie. And kitty mask. :P The little girls all looked precious. Ben, the other little boy in the class, is going to borrow a vest from Jonas, and I'm going to make him a bowtie to match Jonas's. Now to find that fabric downstairs... Jonas did really well on the first go-through of the recital dance, and even though he didn't want to do it again, he did the motions the second time,too--the first time he was kind of revved up and manic in his actions, then he looked like Eeyore the second time. But Janci said that he was actually doing the steps more than any of the other little kids in there, which was reassuring. After dance class, we went over to Sam's Club, and Janci treated us to an early lunch (Thanks,Janci!). She and I had hot dogs, and Jonas had pizza. When we were done, we headed off to see Dr. Bob. I'll actually post that in the next post, and just skip to when we got home for now (since this is about my time with Janci, and all. :P) We were back in time to pick up Brenna from school. We quickly went home and I got her ready in her costume. She takes a bit longer to get ready--mostly because there are so many parts to her costume! Shoes, tights, costume, belt, rhinestone clip, choker, and hair bow. I also did her hair in a bun and put mascara, blush, and lipstick on her--a bit tricky when she was eating a snack! We managed to get to dance class on time, but I had totally spaced bring Jonas's mask. Yikes! I had let him take the DS, though, which was fortuitous because then he and Janci found a less trafficked area and sat and played the game while I helped with Brenna's costume and then watched her perform her routine in class. After dance class (Man, Mondays are busy!), we headed home. Chris was already there, which made the kids happy. Sister Yuvienco and Noah brought over a lovely pasta dish and bread for our dinner, which was so kind of them! So we ate that, then played with the kids for a few more minutes before sending them off to bed. I also introduced Janci to Kid History on Youtube (awesome videos--check them out!). Then Chris, Janci, and I chatted more before Chris went upstairs. Janci and I decided it would be fun to clean out and organize my basement (don't we just live a scintillating life? :P). It is soooooooooooooooooo much better now! She was really helpful in convincing me to get rid of things I don't need--like textbooks I'll never look at again, expired bath products, etc. We chatted and laughed the whole time--like when we found an emergency poncho in a random box of books. We joked that it was a perfect place to put emergency supplies--in an emergency, we could lift our spirits by having a treasure hunt to find our supplies, which would be scattered in boxes around the room. :P We also managed to clear out the entire middle of the basement floor, so it's completely useable now. Go us! And things like holiday decorations are out of the way, but easily accessible. After we finished, we went up and continued laughing and chatting. We stayed up until 2:45 a.m. before we were both crashing pretty bad. Also, we needed to get up at 5 a.m. today in order to get out the door in time to get Janci to the airport before 6. So yes, I got about 2 hours of sleep last night. Wheeeee! I was kind of useless today--I kept dozing every time I sat down, for example. But I got Janci safely to the airport and got home safely, too, so that was good. Even though she didn't get to help out in the hospital, she was a great help mentally and emotionally, because it was just so wonderful to have her here, and she helped with dance class and went with us to the clinic, and helped me better organize my house. The perfect help and gift. Brenna and Jonas were sad that she had to go, and Chris and I were, too. I'm glad they like her so much, since I think she's amazing, and a wonderful friend. I did remember to get the camera out for one picture: All in all, it was amazing. Here's hoping the next time I see her will be before another 3 1/2 years have passed! (Comment on this)
8:18 pm	Our 10th anniversary A week ago, May 1st, Chris and I celebrated our 10th wedding anniversary. Seems weird that it's been so long! Our celebration ended up slightly differently than we'd originally planned, but it was spent having fun together and enjoying time together, so it was lovely. I gave Chris a card in the morning, then most of the day was just a normal day. Jonas did help me make pizza dough because I was making homemade pizza for the kids for dinner. The original plan was to have Connor babysit the kids and eat with them and play with them and we were going to go to an Indian restaurant to eat--all by ourselves! :) When Chris got home, he brought me a card and some daisies and roses, and I finished getting the pizzas ready to cook. Then I headed out to get our babysitter. Unfortunately, she'd forgotten, and had also disobeyed her mom and gone to a friend's house (otherwise, it wouldn't have mattered if she'd forgotten, because she would have been home). So, after trying to get ahold of her for 15 minutes, I drove home. We ended up eating pizza with the kids, then Chris got us Blizzards and we watched the Rifftrax of Harry Potter and the Goblet of Fire. Also, Connor got back to us and apologized very sincerely, and we set up a raincheck date for Thursday instead. Even if there was a hiccup in our plans, it still ended up being super fun, since we spent the rest of the evening laughing together and eating tasty treats! :) So, happy anniversary again to my handsome hubby! :) May the next ten years be full of just as much fun and laughter and hopefully slightly less medical drama. :P Our Thursday makeup date was a lot of fun. We got this fantastic vegetarian dish that I unfortunately can't remember the name of, a delicious lamb saag, and another super tasty dish. They have great naan bread there, too. Brenna and Jonas were disappointed that we were back in under two hours--they'd eaten leftovers with Connor, read library books together, and were playing school. Brenna was the teacher and Connor and Jonas were the students. Brenna wanted us to go back out, because she wanted to keep playing with Connor! :) Connor was also very professional and declined payment since she'd missed the original time. I thought that was very mature and sweet of her. (Comment on this)
Wednesday, May 2nd, 2012
9:43 pm	Week nine of chemo As usual, Monday was crazy. Especially since the kids didn't watch any shows with breakfast, like they normally do. Brenna's school is having a "turn off the screens" week, and if Brenna doesn't play video games, go on the computer, or watch t.v., we can fill out a little slip of paper and turn it in for a chance for her to get a fun prize each day. So, I exercised before Brenna got up, then I got her and Jonas ready for the day and they played in Jonas's room until it was time to go to school. I made a Lazyman cake before taking my shower, so it'd have as much time to chill in the fridge as possible. Then we got Brenna to school, and Jonas and I headed out to do our shopping, put it away, and headed out to dance class. It was our last normal dance class of the year (and our last real time to do Mommy and Me stuff, because if he does dance next year, it will be in the "Tippy Toe" class with just the students and the teacher!). Jonas did a great job participating and did a great job on his recital dance practice (the first time through, anyway...). Next week, it's in-class dress rehearsal, so he'll be all dressed up. Don't have to slick his hair down or put make up on him this year, though! :P Since the mask covers his whole face, it makes it easy. I'm going to have him in his white shirt, dark dress pants, and the pink bowtie I made for last year, with the kittycat mask, I think. After dance class, I got Jonas a hotdog at Sam's club, then we headed over to see Dr. Bob and Kathy. We briefly got to see Colton, but he was just there for his exam--he was headed into the hospital for an overnight stay, so they were just going to do his chemo over there. The clinic is having the main area remodeled, and instead of the drab carpet, they're installing a colorful vinyl type flooring with various swirls and different sized dots. Last time, Jonas was hopping from dot to dot to get around, and Dr. Bob told the people who are putting it together about it. They thought that was really fun. Jonas made Cheri jump from dot to dot with him to get to Kid Town from the desk area, this time. :) He only got to play for a few minutes when we first got there, and I gave everyone the lazyman cake. They all loved it, so that was fun. :) Dr. Bob and Kathy were actually able to get started pretty quickly, so Kathy weighed and measured Jonas, then took his blood pressure and temperature (a bit more difficult than normal because Jonas was eating a ring pop, and it was kinda messy and in the way), then she put his IV in. Jonas did really well again when she put it in, having Cheri read him the little books with the buttons to push to help distract him. Kathy also got the blood they needed for the lab. Dr. Bob handed me some papers to look over and sign--they'd like Jonas's case information to be entered into the pediatric cancer registry thing to be able to use it for research purposes and things. I'd love if Jonas's experience could help another little kid, so Chris and I need to sign it this weekend and bring it back next Monday. Then, Dr. Bob was ready to examine him. Jonas chatted Dr. Bob's ear off, like normal. He made Dr. Bob massage his feet again, too, when Dr. Bob was feeling his feet and having him push against Dr. Bob's hand. When he was half way done with the exam, Jonas said, "Dr. Bob? Before you listen to me [meaning, use the stethoscope], will you foot massage me again?" So Dr. Bob did. They discussed how Kathy will do head massages sometimes, and Dr. Bob was telling Jonas how much his foot massage would cost if a masseuse did it instead of him. :P Jonas was also telling Dr. Bob about how he might still be a doctor after he's a train engineer, but not until he's much bigger--maybe as big as Dr. Bob, because he [Jonas] is still too little to do either. "But I'm growing, growing until I'm bigger, all the time!" After Dr. Bob listened to his breathing and his heart, he let Jonas listen "I hear my heart! It's beeping!", then Jonas told Dr. Bob it was time to look in his brain and nose, and mouth and things. When Dr. Bob was finished, Jonas was asking about the tool he was using, and Dr. Bob showed Jonas how the tool he uses to look in his eyes works. Jonas got to make "lines come on with the light, and a little light, and a purple one" and he was just fascinated by it all. After his exam, he hopped up and ran out to play in Kidtown for a few minutes, until the meds arrived. Then it was back to the room to get his meds in. He played and chatted with Cheri and Kathy and me. The only rough part was when Kathy needed to take out the needle. Jonas hates that part. He says it hurts because it's "scary and it pulls." So, Kathy promised she'd try a different way to take it out next time that might be better and pull less. We still had a little while before we had to get Brenna, so I let Jonas play for a bit more. He did really well. I'm always amazed at how well he handles everything. Still running and jumping and living life at full three-year-old speed. He was having fun asking more questions and chatting with everyone, still. And Cheri was really sweet and played "I'm gonna get you" with him. Jonas also got to pick out toys with his tokens. I remembered to bring his token sheet from the hospital. Between those and this week's tokens, he had 10 tokens. Plus another 10 from the first hospital visit. He ended up using 12 tokens worth, and got a Weebles airplane, a 550-piece puzzle "For you, Mommy!", a talking teddy bear (which he's sharing ownership with Brenna, because it has a bow on its head), a foam craft thing that becomes a cow, a little card set, a big game set with marbles, several card games, and pick up sticks, and something else that I'm forgetting. He made out like a bandit! Jonas's labs also came back, and all his numbers were good. His hemoglobin is back to 11-something, but that's about where he left the hospital at, so he's doing great. All his other levels are perfect right now, too, so that was nice to hear. On the way to get Brenna, I needed to get gas, and he fell asleep. I stopped by the house to grab my new Kindle Fire that my father-in-law just sent me (Thanks!!!!!!), and played that for a few minutes in the car while Jonas slept. Then, it was time to get Brenna. We grabbed her, chatted with Mrs. Rox for a few moments (Jonas woke up as we got to the school), then headed home to grab Brenna's dance stuff. Then it was off to dance class. Jonas watched some older boys playing a game on an iPad, while I read. Then I got to go in and see Brenna and her class practice their whole recital dance. Very cute! I quickly made biscuits and gravy for dinner, then family home evening was about gratitude and blessings, and we started a gratitude journal for our whole family. Then Jonas and I played and Brenna and Chris read more of the BFG until bedtime. Jonas woke up a few times during the night (I think he was scared), but otherwise, it was another successful chemo day! (Comment on this)
Tuesday, April 24th, 2012
10:09 pm	Week eight of chemo Monday, Brenna had a bit of a tummy ache, but she decided to go to school anyway (she was really missing being at school, and she was the special helper on Monday, too!) She was excited, because this month was a "mystery bag" where you write three clues that relate to a special small object that you bring in (hers was a My Little Pony). She did pretty well (we also told her not to have any dairy, and that seemed to help), and had a good day. Jonas and I dropped her off, did our grocery shopping, then went up to dance class. Jonas didn't really want to dance next to me this week, but he did all the dances from his own little corner, and had a great time anyway. He also did a good job with the recital dance. (He wants to bring his music with us to chemo next week and show Dr. Bob and Kathy again. :P). After dance, we headed over to Sam's Club for a few things, then ran home and dropped the groceries off before heading right back over to see Dr. Bob (as in, Jonas stayed in the car while I ran around grabbing things and putting things away). When we got there, Riley was there (he has leukemia. He's also 3, though he'll be 4 next month), so we talked with his mom and grandma--Riley was getting prepped for a spinal tap. Dr. Bob did Jonas's exam right away so he could fit it in before doing Riley's spinal tap. Overall, Jonas looked good--he did have a small sore spot on his rear that we need to watch and put ointment on (some of the chemo drugs can cause sores from his mouth all the way down his GI tract and out. :(), but otherwise, no problems. Jonas was telling Dr. Bob that he thinks he'll be a doctor when he grows up (when he's not being a train engineer). Dr. Bob said he could definitely do that. However, he'd have to go to school, then go to school, then go to more school, then maybe some more school and then he'd get out of school and spend the rest of his career learning. :) Jonas seemed okay with that. Jonas also was cute and said, "Dr. Bob? Can you do the foot massaging?" and made Dr. Bob massage his feet again. I think Jonas just likes that Dr. Bob will do what he asks. He was also asking about whether Dr. Bob was going to look in his ears and nose and eyes, and Dr. Bob told him yes. He told Jonas he'd look in his brain, too, and Jonas looked at him incredulously. "You can't look in my brain! It's in my head! Under this thing!" and he tapped the top of his skull. Then Dr. Bob explained about the optic nerve bundle and how if he looked with the right tool at the right place, he kind of could see Jonas's brain. He also told Jonas that maybe Brenna needs a vampire doctor, too, since she was still not feeling well, and Jonas was feeling much better. :P After Dr. Bob finished his exam, Jonas got to play in Kid Town for a long time (while they went and did Riley's spinal tap, then his chemo treatment). He played with Cheri for a while, while I chatted with Melissa and her mother-in-law, then they went with Riley for his treatment, and Jonas and I played together. Finally, it was Jonas's turn, and we went in to get Jonas's treatment. Jonas told Kathy "I really missed you last time!" He was so brave--he flinched, but didn't even cry when she put his needle in this time. His best time yet! He also had Cheri read some books that have little sounds you push for part of them (A Mickey Mouse one and a Cars one) with him while Kathy was taking his blood pressure, temperature, and putting the needle in. He really is such a brave little guy. He actually had a harder time when Kathy took off the tape and pulled the needle out than when she put it in this time. He was cute--he helps "check" his chemo medicine, to make sure it's correct. He looks for his name and spells "J. O. N. A. S." Jonas! Then he looked for "vinCRIStine" and spelled that out, too. After his medicine was done, he helped to flush out his port and put the heprin in (He helps Kathy push the syringe). Kathy was going to leave the needle in until the lab results came in, but it was almost time for us to go if we wanted to get Brenna from school. Since he seemed to be doing so well, she just took it out after all, and said she'd call us with the results (his hemoglobin was up to 12.3, his ANC was good--not spectacular, but higher than expected, and his other counts were good, too). I'd also been telling them about some of my favorite easy recipes, and wrote down the Lazyman Cake recipe before we left. Then we headed out to get Brenna. We got there in time to park, so I could talk with Mrs. Rox, so that was nice. I wanted to make sure to thank the right people for the hats and umbrellas! Sounds like the kindergarteners raised all the funds used to get our hats. How awesomely sweet! We headed home to get Brenna changed into her dance clothes, then headed back up to the dance studio. She wasn't feeling well again, so missed out on a bit of the end, but she did get to practice her recital dance. I also got her signed up for next year's dance class. After dance class, we headed home to make dinner. After dinner, we had FHE. We talked about the Holy Ghost, and what he does and how he helps us feel Christ's love for us. Then we got out the plain hats and gems and fabric paint and glue that were in the hat box from the school, and we all decorated our hats! We had a lot of fun making them. :) All in all, a great chemo day--Jonas felt good, and wasn't too tired after his treatment, so that's good. I'm always happy when he has a "feeling good" day! (Comment on this)
8:38 pm	The weekend Saturday, Chris had to get up early to help out with a church responsibility, and the kids and I hung out together at home. It was a fairly low-key morning, though we did get laundry worked on, both bathrooms cleaned, trash taken out, and I vacuumed downstairs and cleaned out the vacuum's filter. In the afternoon, Dale came over to play (Allie and Zana were both in trouble). Brenna was in trouble because of her temper tantrum the night before, but Jonas was allowed to play--so I had Dale and Jonas play outside until they were too cold, then they played with Jonas's train table downstairs for a while. We also gave Dale the rest of the Lazyman cake to share with his sisters, once it was time to head out to do errands. It was nice--one of Chris's coworkers gave us a gift certificate to Barnes and Noble, so we went over to the mall and found some books for everyone. I made out like a bandit--I got 3 books, Chris got 1, Jonas got 1, and Brenna got 1. We also got a book for me to read to the kids (the Sisters Grimm). It was a lot of fun, though Jonas fell asleep on the way there, and I had to carry him throughout the store. He gets heavy, very quickly! At home, we made dinner and watched a show together, then had a quiet rest of the night. Sunday, poor Brenna still wasn't feeling well, but we made it through Sacrament meeting (well, Jonas and I spent most of the time in the foyer. He didn't sleep well the night before and was VERY grumpy). Then, Jonas was in charge of the scripture and the opening prayer in Primary. They said he could either read the scripture for the month, or recite his favorite scripture. He wanted to do "Daniel in the Lion's Den," and wasn't pleased when I reminded him that the story was a bunch of verses, not one. We ended up just reading the scripture of the month. However, he did a fantastic job! He also did great with the prayer, and didn't need much help at all. Afterward, we collected Chris and Brenna and headed home. We read books together, ate lunch, and played games. It was a nice Sunday afternoon and evening. (Comment on this)
Monday, April 23rd, 2012
9:39 pm	Friday= Ward Talent Show! On Friday, we got Brenna off to school, but she was home again right after lunch. :( Poor girl just still didn't feel good (Jonas and I ended up taking her to the doctor--which worked out, since Dr. Naik had wanted to know how Jonas was doing anyway). He thinks her tummy ache is left over from the tummy bug from last week. I'm not so sure, but I'll give it a week before going back. I just don't know whether I'm being paranoid or not, after what happened with Jonas. :/ Most of the day, when we weren't picking up Brenna or taking her to the doctor, I was making raspberry bars for my "culinary talent" contribution (Jonas and I had to go to the store really quick, as I didn't actually have pecans at home. Whoops!), or practicing my story "The Death and Burial of Snowball." The last time I told it in public, I'd had trouble making it end in a good place. But I rearranged it a bit, so it ended with the end of the eulogy, and that worked much better. Shannon also recommended using Brenna's Squeezebox to play "Taps," since in the story I used a concertina. It took me a long time to figure out the right buttons to push as I moved the bellows in and out (I started out using a flute note thing, and that seemed to help), but once I figured it out, I wrote it down and brought the paper with me so I'd remember on stage. :) I think it was a great addition to the storytelling (thanks, Shannon!). After Brenna came home, I helped her whip up some sweetened whip cream, then she made Lazyman Cake (graham crackers, raspberry jello powder, apple sauce, and the whipped cream) for her culinary talent. That stuff is so good--it tastes amazing after chilling in the fridge for about 2 hours--you'd never know it was graham crackers just by tasting it. Brenna and Jonas also had fun playing, and we cleaned up the house together. Dinner was southwest eggrolls, and then we headed up to church for the talent show. What I didn't realize is that I was put first on the program! I hadn't even finished taking my coat off when they called me up to start the show. Yikes! It started out a little shaky, because I wasn't mentally prepared yet, and the microphones were having issues, too, but people seemed to like it anyway. Lots of people told me they thought it was funny, anyway. :) The Squeezebox addition was a big hit. :) Lots of good acts/performances. One couple had a song and dance number to "I could have danced all night" that was just great, and Bishop Sorensen did some great poetry recitations. Lots of other good performances, too. The food was all great (including some Hmong eggrolls, which I'm pretty sure are the perfect food. I could eat them all day, every day.) People liked our family's contribution, too, which was fun. :) We didn't get home until after 9, and Brenna threw a major fit and lost playing privileges with her friend the next day, which she wasn't too pleased about, but oh well. Both kids did eventually get to sleep (Jonas went fairly willingly). Though the evening didn't end very well, the talent show itself was a lot of fun. :) (Comment on this)
9:20 pm	Thursday Thursday, Brenna was still not feeling well, so she stayed home another day. So, I read a bunch of library books with the kids, and we cleaned things, and Brenna and Jonas played together a bunch. It was a nice, low-key day. The evening was the very best part, as our friend Chris Sorensen came over to watch the kids while Chris and I went to have dinner and watch Trans-Siberian Orchestra in concert! We cooked pizza for Chris and the kids (apparently, they were mostly well behaved, ate ice cream, and read stories, and Chris sang them several songs for bedtime. Also, Jonas insisted on calling Chris "ChrisSorensen" the whole time. :P). When we left, we tried to go to Fayze's, but the wait was almost an hour--and it was the same at Buzzard Billy's. So, we ended up going to Jimmy John's and getting sub sandwiches. They were super tasty, though, and we had fun just eating and talking with each other. The only downside was that it was cold and rainy outside, so my light jacket got soaked through. Brrr! The concert started at 7:30, and we got in the La Crosse Center about an hour early. We pretty much had the most amazing seats ever! We were in seats 3 and 4 in Row 3 on the floor, so we were super close to the stage. The show was spectacular. We'd seen them in concert before (3 times!), but it was always the Christmas show. This one was Beethoven's Last Night. The narrator was fantastic (I think it was the same guy who narrated the Christmas one we've seen), all the musicians and singers were incredible, and the violinist, Roddy Chung, was unbelievable. At one point, he was playing his electric violin (perfectly, I might add), with the violin above his head while he was head banging and jumping up and down on one foot while kicking high kicks with the other. Insane, but amazing. He'd run around the stage and jump around and was just amazing. The only sad thing was that they didn't play my favorite song from that album (Mephistopheles). But they played one of my favorites from the Night Castle album as one of the encore songs. :) It was the best anniversary present ever! (Chris and I will have been married for 10 years on May 1st). I love TSO, and they didn't disappoint. Fantastic from beginning to end. One cool thing that they do is that 1 dollar from every ticket sale in each place goes to a local charity or local cause. They were able to give over 3 grand to the La Crosse School District Music Department. How neat! Because we were in the middle row in front, we were actually able to hear by the time we got home. :P and the view was fantastic. I even managed to take some cool pictures! A wonderful date, and a great way to make a long week much better. :) (Comment on this)
Friday, April 20th, 2012
10:20 pm	Wednesday Jonas did end up throwing up the rolls, unfortunately, but since they were already pumping him full of blood and fluids, he didn't get dehydrated from the stomach bug. Right when Jonas was falling asleep, he was struggling to be lucid enough to tell me something. He said, "Can you...can I...can I ask the nurse to hug me?" "Sure thing, " I told him, and pushed the call button for him. When Melissa, the nurse, came in, he very sleepily murmured, "Can you hug me?" She did so, and he smiled. Then the nurse left again, and he said, "Mommy? Can you...can you hug me?" So I did and then he said "I love you. G'night." and fell asleep. So. Stinking. Cute. A little bit later, Raquel came over to bring me my clothes. We stayed up late talking and watching "Baptists at our Barbeque," which was pretty funny. I always love spending time with Raquel. I'd rather it wasn't at the hospital, but I guess I'll take what I can get! I got to sleep at a little after midnight, then woke up an hour later to help take Jonas to the bathroom. Then, Jonas was up and bright-eyed and bushy tailed at 5:15. That's how I knew he was feeling better. :P He even ate some banana and cereal for breakfast. Once he'd had breakfast and a sponge bath, he was allowed to go to the playroom (quick side note--our nurses that day were Kim and a student--Mollie. Kim asked Jonas if she could have a hug, since she'd heard he was good at those. He told her, "No, I only sometimes like to give hugs. Today it's high-fives.") While we were waiting for permission to go to the playroom, Jonas chatted with the IV services guy who came to take a look at his port. Jonas was asking his name, and what he does, and what were all the things on his cart for, and did he know where his nurses were, because he wanted to go to the playroom. :D Jonas and I played for a while in the playroom--he played foosball, and rode around in little cars, and played trains. Then Mollie played with Jonas so I could get some breakfast in the cafeteria. When I came back, they were playing with the toy kitchen and pretending to cook and eat all the play food. Jonas also got to help the play lady feed the fish, which he thought was really neat. After awhile, we headed back to the room to get Jonas some lunch (and the nurses needed to draw some blood to check how the transfusion helped), and then Dr. Bob stopped by. He let us know that Jonas's hemoglobin levels went from an 8.2 to 11.5, so he was nice and full of functioning blood at the moment (no wonder he looked so much better! :P). As for being at home, he needed to take some zofran, and we needed to make sure everyone really washes their hands well, and he needed to be on the BRAT diet for two days. Other than that, Jonas was good to go! So, we packed up everything, and got ready to go. Right before we left, the Children's Miracle Network lady stopped by. She gave us a bunch of photos of Jonas and Brenna with Buckets, she gave Jonas a teddy bear (Jonas gave it to Brenna, so she'd get a gift), another little blanket, and a super awesome light-up, sound effect lightsaber (a Biiiiiiiiiig hit in our house!). She also asked if we'd be willing to share Jonas's story with news people or others, since they get asked for personal stories sometimes, and Jonas is nice and personable and chatty, and we're pretty open about things. I said sure, so maybe Jonas will end up on t.v. again sometime! :) We got out of the hospital at about 2:30 (Sarah the CNA was there, which made Jonas happy, because she runs him up and down hallways in the little wagon to get to the car, and he looooooooooves that), and headed home. Once we got home (Brenna was home, sick, and Chris had stayed home with her), we said hello, then I cleaned up our stuff and planned for Cub Scouts (we did physical activity stuff, shared stories and talked about the dangers of drugs and alcohol. We also did wheelbarrow races. It was Sam Crosby's first day as a scout, which was fun.). We had lentil soup that Sister Baker had made for dinner (SO. GOOD.), then I left the kids with Chris for bedtime, and I headed out for Cub Scouts. I was so proud of myself--I even got home before 9. Go me! It was nice to be home. The people at the hospital are great, but it's still a hospital, and it's nice to let Jonas run around, untethered by an IV tree. All in all, a good day. (Comment on this)
Tuesday, April 17th, 2012
7:19 pm	Week 7 of chemo Monday morning started out pretty well. Brenna was tired and slept in a bit, but we still got her up and dressed on time to go to school. Not fed though, but that's her own fault--I put out cereal and milk, and she didn't like her options (fruit loop knock-offs and multi-grain Cheerios), so she said she'd just wait until snack time at school. Ooookay, then. I also got Jonas dressed, got my Wii Fit time in, showered, and began the process of packing up everything in preparation for our overnight hospital stay. We took Brenna over to school, then Jonas and I went to do our grocery shopping. We went to Festival, because they have much better produce than Walmart does (and their avocados are both better quality and cheaper!). We actually ran into one of the night nurses from the pediatric ward at the hospital in the parking lot (she was in the car next to ours). That was fun. After we did our shopping, we went home and Jonas played while I scrambled to get everything cleaned/organized/packed, etc. Then we headed off to dance class. We got there just a tiny bit late, but we'd only missed about 3 minutes of warm up. Jonas did a great job, for the most part (he didn't want to do the actions to one of the songs, but he did actually make up his own, so he was moving and enjoying the class, and that's really the whole point). He also did a good job practicing the recital dance. After dance class, I chatted with Ashley (a lady that lives near us in the complex), then quickly headed over to Sam's Club to pick up a few needed items. From there, it was time to head to the clinic. We were running a little late, because I let Jonas get a hot dog at Sam's Club, but since he didn't get any food for a long time at the clinic/hospital, I'm glad I let him eat then! Kathy was not at the clinic today, and a nurse we'd met way back at the beginning, when we first received Jonas's diagnosis, was there to fill in (Lynda). She's very nice. Jonas got to play in KidTown briefly, then it was over to get his height and weight, and then to get his vitals checked and his needle put in his port. He did the best he's done yet. He was afraid, but only cried a little bit. He was so brave! He actually asked for Cheri (the play lady) to come in with her books and squishy ball, to help him while Lynda did her part. After that, Dr. Bob gave Jonas his exam. Still no sores, clear ears and nose, and everything was looking good. Jonas is funny--he knows what he likes and wants to do, and lets them know it! Right when Dr. Bob came in, he asked, "Dr. Bob? When you're done listening to my tummy and body, can I listen?" So, of course, Jonas was able to do so. Then, when Dr. Bob was done with the exam, and starting to put Jonas's socks on him, Jonas stopped him and said, "Wait! You need to do this (he demonstrated a basic foot massage) to my feet first!" So Dr. Bob obliged and massaged each of Jonas's feet before putting the socks on. Then Jonas was happy to go play in KidTown again. I'd been pushing water and juice on Jonas all morning, hoping to avoid a repeat of last time with the midnight start time of his meds. It mostly worked, in that he started at a bit after 7 p.m. instead. Next time, I'm pushing liquids the day before, too! After a while, it was time to go over to the pediatric ward of the hospital--they were going to do all three of the chemo drugs over there. Since our car was by the clinic, with all our stuff in it, the nurse, Lynda, took Jonas over and I went and moved the car to the parking garage next to the main hospital building. As we were leaving, Jonas was given an Easter basket with puzzles, books, toys, and a few candies, courtesy of the Onalaska Clinic. How nice! Some of it is still in the car, but I brought up several of the toys for Jonas to play with here. When I got up to the peds ward with all our stuff, Jonas was entertaining the nurses. Apparently, they had a stuffed lion doll waiting for him, and they asked him what the lion's name was. He named it "Rock-n-roll." So, the nurses wrote "Welcome Back Jonas! and Rock-n-Roll Lion!" on his whiteboard in his room.:) The student nurse from last time, Richard, was here again, along with another one-Brent. Brent is actually LDS, too, which became relevant a little later. They chatted with us for a while, and asked questions for their homework. Also, later, once Jonas started his chemotherapy, instead of each donning one of the paper aprons the nurses have to wear when administering chemo, they shared one and kept doing silly things to make Jonas laugh. They hopped around, pretended to be different animals, and then they danced around as Jonas sang songs, joining in on the songs when they knew them. Jonas sang Twinkle, Twinkle Little Star and (with Brent singing along) "Jesus Wants Me for a Sunbeam." It was very funny and cute, and Jonas thought it was fantastic and hilarious. I also got pictures and video of some of their antics. :) They're on the camera, though, so I can't post them right now. Sister Baker came to visit, bringing some fun little games for Jonas to borrow, and brought some cute kites for Brenna and Jonas. Once Nate was done with his orthodontist appointment, he came over to play, too. Then Bishop Baker stopped by for a few minutes, too. Sister Baker kindly brought some lentil soup, fayze's rolls, and oranges. Yum! Later in the evening, Raquel came to hang out with me. We had a lot of fun. Jonas wasn't really hungry at dinnertime, but Raquel had brought me strawberries, so Jonas ate a bunch of those. Jonas didn't really go to sleep until almost 10 (he never goes to sleep on time in the hospital), but Raquel and I just talked and had fun. I braided the front of her hair, then tried a crown braid. It turned out pretty well for my first attempt. At about midnight, Jonas woke up crying and threw up a ton of strawberries. :( He was just feeling awful. The nurse came in and helped clean him up, then a few minutes later, as I was saying goodbye to Raquel, Jonas threw up again. So, they ordered up some stronger anti-nausea meds. I ended up staying up until 2:30, because Jonas threw up several more times, and I wanted to be able to be right there to help him. At one point, he was crying and saying "Mommy! I just need you!" and "Mommy? I just need to be close to you!" The second set of meds didn't do a whole lot, either. They then gave Jonas some Benadryl (I didn't know it was an anti-emetic!), and gave him some more Zofran, a little early. Then Jonas was finally able to sleep a bit. Of course, then every two hours we had to get him up to go to the bathroom, but I got to sleep for about 3 hours. The sun woke me up at about 7. Jonas, happily, was still sleeping (he ended up waking up at about 9:30). Chris called--he'd gotten Brenna over to Alison's to get her to school and headed to work, but he felt miserable, so he ended up just taking a sick day since he hadn't clocked in yet. This ended up being a good thing, as a few hours later, the school called Chris to go get Brenna because she was having to spend most of the morning in the bathroom. When Chris went to pick her up, Mrs. Rox handed him a box full of things from the special Hats day thing that they did for and in honor of Jonas at school--there were a ton of hats (for Jonas, and the rest of the family), some sweet cards, an umbrella for each of the kids, and a few other items. Really kind and generous. Chris and Brenna came over to the hospital (Brenna wore a mask the whole time). They showed us the stuff, and then the missionaries came to help Chris give Jonas a blessing since he was sick and still needed to get his blood transfusion today. I also set up an appointment for Brenna for a few hours later to see what was going on with her. Jonas wasn't very hungry this morning, though he eventually ate a banana and some fruit loops. After Brenna's appointment, Chris called to tell me that apparently, there is a bug going around that causes severe diarrhea, with some people getting bloody vomit, too, and that Brenna happened to have that bug (seems like she actually has a mild case, relatively, since she just has the first symptom). She's not supposed to be in the same house as Jonas (which would make tonight interesting, if we'd actually ended up going home) for a day or two (now a moot point, as I will presently explain). She and Chris went to get the recommended things from the store (probiotic pills, live culture yogurt, orange juice, crackers). During that time, Dr. Bob came to take a look at Jonas, and I told him about Brenna. He thinks that instead of a reaction to the chemo drugs, it was the beginnings of this virus (later confirmed when Jonas starting throwing up, had some Benadryl, went to sleep, then woke up later only to throw up again and have diarrhea. Joy! I suppose it's a good thing we were already in the hospital--makes the bill slightly cheaper, actually, because if we'd gone home and then Jonas started getting sick, we'd have to go straight to the E.R. and get admitted back into the hospital. At any rate, we will now be here until sometime tomorrow. Jonas did get to go to the playroom for a while (and got to show off his spiffy new slippers, courtesy of our friend Alice Robinson) and see Charlie the Therapy dog, before he went to tell Lynda that his tummy hurt and he needed more medicine (that's when we went back to his room and read together for a little while before he started throwing up again.). Poor kid has looked sicker today than he has this entire time. He's super pale, the red's gone from his lips, and he just looked sad, tired, and pitiful, with no energy. For a while, he wanted me to hold him after we'd cleaned him up, and he ended up falling asleep in my arms and we stayed that way for about an hour. Happily, he's perked up a bit since then, which makes me happy. For a while, we looked at an I Spy book together, which was fun, and made silly faces at each other. Right now, it's 6:30 and he's watching Deadliest Catch (his choice, because there are BOATS!!!!), playing with a Fisher Price Little People's Farm and animals, and having blood pumped in through his IV. So far, so good. His color hasn't improved much yet, but he's only got a little bit of it in his system yet. He's back to acting like his awesome, super silly self, which makes me feel much better (he's also managed to keep down 2 1/2 rolls [knock on wood] (at one point, they gave him Tylenol and he promptly threw it up, and then later they gave him another anti-nausea drug before adding the blood to his IV). It was really sad seeing him so wan and listless. :( So, the current plan is to stay here overnight (Chris is packing a new overnight bag for me, and Raquel is being super awesome and bringing it to me so I can have clean clothes). And since Brenna can't go to school tomorrow, Chris is taking a sick day (since he doesn't feel all that great, either), and taking care of her. Dr. Bob says that since Jonas already has the bug, we can have the kids in the same house--we will just have to have strict handwashing protocols in place. Now it's 7:15 (the joys of writing an entry over time). Jonas continues to do well. He still hasn't thrown up, and he's moved to playing with toys, reading a book, and watching "AirBuddies." Here's hoping Jonas has a much better night tonight! (Comment on this)
8:24 am	The weekend Saturday was a lot of fun, and a great way for everyone to recharge and just enjoy each other. The kids did insist on getting up waaaaaaaaaaay too early, as usual, but such is life. Saturday was Brenna's last day of swim lessons. It was a bit different than normal, because they were testing their skills to give them a report card. Brenna passed and can go up to the next level, which made her happy. She had a great time, and I had fun chatting with Brock and Melinda. Brenna was also excited because she got to wear her new bathing suit from Nana and Grandpa. It's a cute suit with a little ruffle around the middle and flowers, lady bugs and other designs all over it. When we got home, I did chores for a bit, then looked up movie times. I wanted to take the kids to see the Arietty movie at the cheap movie theater. Sadly, the movie left that theater on Thursday. :( But, they were showing "Journey 2: The Mysterious Island," which didn't look too horrible. Chris was already set to go watch "Hunger Games" with Blais that evening, so he didn't want to go. So, he got some alone time, and I took the kids to the movies. It's a theater where you can buy pizza and other food, and they'll bring it to the table in front of your row of chairs. It's awesome! So we got pepperoni pizza and popcorn and a pitcher of water. The kids thought that was the coolest theater they'd ever seen. :) They thoroughly enjoyed it. Jonas thought some of the spots were a bit scary (like a giant lizard chasing them, and an electric eel). He was so cute--he put down his pizza, scooted closer to Brenna (he was sitting in the middle), and put his arms tightly around her. "I'm scared, Brenna!" he whispered, and she put her arms around him, too, and whispered, "Don't worry, Jonas, I'll protect you!" So. Dang. CUTE. Overall, they both liked the movie. I asked Jonas what his favorite part of the movie was, and he said "All the good parts. I just didn't like the scary parts." After the movie, we headed home (after stopping to get gas and some milk) for some quiet time (Jonas fell asleep in the car). Then Zana and Dale came over and wanted to play, so I got them some snacks, and put water in the water table so they could use it to water plants and play. Dale also wanted to make a project, so I got some paper bag puppet stuff out and he made a dragon puppet. Zana wanted in on the fun, so she ended up making a bunny mask. Rachel ended up calling to see if we wanted to come hang out while the guys were at their movie, which was funny, because I was about to call her and ask her if she wanted to come hang out with us! Since she's the one with the newborn, we went over to her house. I brought along all the stuff to make dinner (which turned out to be a great thing, because the meal they were supposed to get didn't materialize. Whoops!). So, the kids got to play with Simon and see baby Theo, and play in Simon's sandbox, and chat at the chickens, and I got to chat with Rachel and cook. It was a lot of fun. I made Eggplant Parmesan and salad. Rachel wasn't sure if Simon would eat it, so she made some spaghetti to go with it. Simon ended up really liking the eggplant, and my kids mostly ate noodles. :D Note to self: ask Rachel if I left my oil there, as it doesn't seem to be in my pantry.... While we were there, Jonas watched Rachel hold Theo for a few minutes, then asked her, "Rachel? Is Baby Simon's baby brother a toy?" He was told no, that Theo was real, and he said, "But he can't walk yet? Because he's so little? (the baby isn't even 2 weeks old yet)." She told him that no, Theo couldn't walk yet. He couldn't even crawl! Jonas said, "But I can walk! I'm not too little. I'm just the right size!" He thought it was fascinating that the baby was an actual person, if a tiny, non-walking one. :P After Blais and Chris got back from the movie, we hurried to pack up and get home, for roleplaying (I also got her to let me clean her kitchen for her, which was fun, since it wasn't mine. :P Maybe I should pretend my kitchen belongs to someone else--then I might like cleaning it more!). We didn't end up actually roleplaying, as people weren't really in the mood, but we had a ton of fun chatting and watching Rifftrax shorts together instead. It was a lot of fun. We have great friends. Sunday, I got to dress the kids up in other new outfits from Nana and Grandpa, and Jonas got to show off one of his new cloth masks from the Millets. He's been having trouble keeping his mask on in Sunbeams, though. He seems to respond well to "Super Secret Ninja Missions," though, so I think I'll have his next mission be to keep his mask on during Sunbeams, and we'll see how it goes. Sunday evening, I didn't actually have a plan for dinner, but I had the ingredients to throw together some tasty soft tacos. Brenna threw a massive fit over the fact that she wanted to watch Planet 51, and the rest of us didn't, so that was a bit frustrating. I'm pretty sure it was just a manifestation of her general worry and reaction to what's going on, because normally she doesn't have that massive of a tantrum over something quite so small, but understanding why she's acting out doesn't mean she gets to avoid consequences, unfortunately. And I'll be working with her this week to again come up with better ways to express her feelings. Poor girlie. :( She did manage to calm down and enjoy the rest of the evening with us, so that's good. And a bit before bedtime, the Relief Society president and her daughter came to bring cookies and visit, so that was very nice. I am very grateful for a loving ward family. They work hard to make sure we're taken care of. (Comment on this)
Sunday, April 15th, 2012
4:09 pm	The rest of the week (through Friday) Tuesday was a fairly low-key day, if pretty busy for me. I think Tuesdays are the hardest days for Jonas. He tends to be more tired, grumpier, and you can tell he doesn't feel so good. He actually told me that he had puke in his head, but when I offered him some Zofran, he declined it, saying that he thought the puke belonged there. While I'd rather he took it, I figure it's best not to force it when it's not something he MUST take. If he actually throws up I'll make him take it, though. I spent most of the morning working on three freelance projects for my main client (two new ones, one I'd been putting off) while Jonas watched various movies. I figure it was easier for him, and I used the downstairs computer for most of it, so I could chat with him and spend time with him, too. The afternoon was also mostly work, but I got almost everything done that I needed to. We picked up Brenna and worked on reading for a bit (Mrs. Rox started the book bags with books for the kids to take home and read with their families. Brenna had two books that were super easy for her to read, one that took a bit more effort, and a Young Cam Jansen book--which she did a good job on, but I think she's still a little intimidated by. We also said goodbye to one of the Elders that evening--he's headed up to an area in Canada to serve! Most afternoons this week, Zana and Dale came over to play (Allie is grounded, apparently). They like making projects--especially Dale. They also spent some time playing in Brenna's room, and playing with the water table outside. They all like watering various plants with the water, too. I told Dale he could help me plant things once the danger of frost is over. He's very excited for that. We also made more paper bag puppets, kites, and stamping. I need to come up with some other easy projects for this coming week! On Wednesday, I did more work (finished up the third project), and Jonas and I went to the library together. I also finished planning for Cub Scouts (we did secret codes and exercises, and invisible ink). Cub Scouts went well, I think. Now I need to plan for this week! Maybe I'll do that while I'm at the hospital with Jonas tomorrow. Or, maybe I'll just do it today, since all my books and papers are here! On Thursday, Jonas and I had another uneventful day (yay!) We actually went to the Children's Museum, which was nice. We made it in time to go to the Little Learners class, which we haven't been to since Jonas was diagnosed. Melinda and her kids were there, too, which was nice. And Lisa and her kids. Afterward, we met Chris for lunch and had soup and a sandwich. On the way home, Jonas asked, "Mommy, can I go to sleep in the car?" "Sure, go ahead!" "Okay, just don't ask me any questions." *a few minutes of quiet* "I love you, Jonas!" "Mommy! No words, either." I guess he wanted it all the way silent. :P He did end up falling asleep, so it worked, at least! Once we got home, I spent quite a bit of time getting my presentation ready for the Relief Society meeting on Family History. I found my papers about questions to ask in an interview, I gathered examples of family history, and I found my tape recorder. The meeting was really good. Raquel talked about getting started with genealogy, I talked about interviewing people (and interviewed Sister Dolores Peak for a few minutes--I knew it had gone well when I stopped her [because of time restraints] and sighs of disappointment echoed around the room. :D ), and Susanna talked about new family search. It was a fun meeting. Friday was another busy day (including getting an oil change for the car. Jonas thoroughly amused the people working there with his exuberance and his laughter), culminating in role playing with our friends, which is always fun. I'm playing a gun slinger with a Southern accent. We had fun watching a movie with dinner while eating tuna dip (well, everyone except Chris, who had left over meatloaf). It was a good ending to the week--especially because Chris got to come home early from work! Hurray! (Comment on this)
3:38 pm	Our Harlem Globetrotters experience Brenna and Jonas were so excited to see the Harlem Globetrotters! I was so excited that it was Spring Break for dance class, because then I didn't have to worry about getting Brenna to class, then running back home to cook dinner before heading over to the La Crosse Center. :P After dinner, we got the kids ready, then drove over and parked in the parking garage. We were supposed to meet Cheri and the other families in the lobby of the La Crosse Center at a quarter to six to get our tickets. We got there a little early, which was fine. Cheri got there, but she'd forgotten the packet of tickets! Whoops! Luckily, her family was coming anyway, so she called and had her husband grab the tickets off the couch where she'd left them. Brenna was very happy to see Maycee again, once she got there. We saw several other families from the clinic there. One was Riley--a little boy with leukemia that comes on Mondays sometimes, and then there were five or six other families with kids I haven't met before (must not be Monday patients. :P). Once we all got our tickets, we headed in to wait for our Meet and Greet with several of the players. We got to meet with Moose and Bingo, which was fun. We forgot the kids' team picture with Bucket's signature (whoops!), so we just had them sign a piece of paper for us. We also got to have the kids take a picture with them. They kinda just shoved us all out pretty quickly at the end, as the players had to go get ready, but it was neat to meet them. After we met them, we went and found our seats. They were fantastic! We were in row DD, which is super close to the floor: We also got a picture of Jonas with the other kids from the oncology clinic: We were all excited to see the show! It started out with the mascot, Globie, and some dancers who did tricks, then they explained that it was the "World Championship" against the International Elite, and that if the Harlem Globetrotters lost (for the first time in 40 years), they wouldn't get to go on tour next year. The game was a lot of fun. The players were really good, with the basketball part, the tricks were a lot of fun, and the little show bits were great, too. Some favorite parts--when one of the players climbed up and sat on the basketball hoop. When the other team shot a ball at the basket, he caught it, and threw it down. They also disputed a call with an "instant replay" that involved them doing everything in reverse, then a slow motion forward again. They also did a skit that involved one of the players grabbing a kid out of the audience to act as a shield from water, then the other player grabbing a man out of the audience and doing the same thing. Jonas and Brenna loved it! They were also very happy when we bought them cotton candy and a snowcone to eat. :P Shannon (my sister) was sad that we didn't get to meet Big Easy or Flight Time (?), as she'd really liked them on The Amazing Race, but I did try to get a picture of Big Easy (Flight Time wasn't there) on the court, at least. :) Brenna and Jonas were a little disappointed that TNT (the one girl Globetrotter) and Buckets weren't playing, but otherwise they had a fantastic time--even though it ended at 9 p.m.! Jonas fell asleep on the way home, and we got Brenna to bed as soon as possible. I felt a little bad about her getting so little sleep the night before school started back up, but hey, how often do you get to do something like this?! All in all, it was a lovely experience, and it was fun to see it with Riley's family and others from the clinic. (We actually got to see Dr. Bob and meet his daughter, Livvy, at one point, which was nice. She's middle school age, I believe.) (1 Comment |Comment on this)
9:26 am	Week six of chemo Monday was Brenna's last day of Spring Break, so she came with us to Jonas's chemo treatment again. I think she was a little disappointed that Maycee (one of Cheri (the play lady)'s kids) wasn't there this time. But Colton was there, and Brenna, Jonas, and Colton had fun playing together. Dr. Bob called Mondays "Rhabdomyosarcoma days" since Jonas and Colton both come on Mondays and they are the only ones with that kind of cancer being treated at Gundersen at the moment. Poor Colton had another meltdown while we were there--I wish I could help him. It's so hard to go through this, in the first place, and it's so sad to see the poor little boy just so terrified all the time. :( It was nice to talk to his Grandma again, though. She really is a neat and special lady. A week or so before, I'd also promised Dr. Bob and Kathy that I'd bring the CD with our recital dance song on it, so Jonas would show them his dance. He danced for them, and did a great job! They thought he was super cute. The social worker I'd borrowed the book from was there, too, and we chatted for a little while. She's very nice. Dr. Bob took a look at Jonas. He's still doing really well. No real sores, no skin infections (knock on wood)--other than the whole cancer thing, he's really healthy. :P Jonas was making Dr. Bob laugh, because he was talking a mile a minute. It was hard to ask Jonas any questions and get an answer, because he was too busy sharing every observation that came into his head. He really likes Dr. Bob, and chatters the whole time. It's really sweet. Dr. Bob said he's happy that Jonas is doing so well, even if it's hard to get him to pay attention to what he's being asked, and he wouldn't have it any other way. Again, Jonas was not happy about having his port poked. I don't think it really hurts him, especially since we put the EMLA cream on it to numb the skin, but he's really afraid of it. He's really good about trusting me, though, and he calms down really quickly after we get the needle in. He helps take the press 'n' seal off, wipes off the cream, and once the needle is in, he likes to help flush the saline through. He likes watching for the blood return, and sometimes he'll shake the little blood sample tube for Kathy. He always tells her when he sees little bubbles in his tubes, so she can get them out, too. I think he keeps himself from getting too scared by asking even more questions than normal. I know I always feel better about things, when I know exactly what is going on, and I think he does, too. Kathy and Dr. Bob are very patient with him and are always happy to answer every question he asks, even if it's the 20th time he's asked the question. He also likes getting to choose which arm the "blood pressure" goes on, and whether the "temperature" gets put under his arm or in his mouth. KidTown continues to be a wonderful place, because Jonas loves it so much, and he doesn't mind having to get his treatments as much, knowing that he gets to play before and after. This week, his counts were good. His platelet count was still at 8.5, which is a good sign, as it means it will probably rise instead of drop this week--meaning he probably won't need a transfusion for a while yet. Hurray! The Neulasta shot is working, too, so his ANC is a good number, so his immune system is still limping along--an extra good thing when your sister is in Kindergarten and likes to bring home all kinds of nasty germs. :P Over all, it was a very positive visit. One funny thing--Dr. Bob mentioned that I should try to hydrate him as much as possible before the next appointment so he would get ready for the cytoxin faster. I had thought he went in on the 8th week, rather than the 7th, so I asked him about it. He went and checked and it was indeed the 7th week. He told me, "I thought it was the 7th week, but you're right so often, I doubted myself and had to go check!" It was a nice boost of confidence for me that I have been able to figure things out to mostly know what I'm doing with all this, even if I was wrong this time. :) Dr. Bob was amused that Brenna's final verdict is that he's a nice vampire in disguise, who helps people during the day and goes out and sucks blood at night. Brenna is sad she doesn't get to go to KidTown next time, because she loves the treats and the toys there! She convinced Jonas to get a Play-dough set with his tokens this time, and they had fun playing with them when we got home. Next post (hopefully writing that later today): our trip to see the Harlem Globetrotters! (Comment on this)