MARYJEANSL's SparkPeople Blog MARYJEANSL's Blog on SparkPeople, home of free diet plans and a healthy living community A Scare at Work What a day! In the interest of earning a bit more money for Christmas, I <BR> applied for another job watching children at another church, the one <BR> affiliated with my son's scout troop. The people there are just lovely, <BR> and I have to say that they run their child care program much better <BR> than my own church does. My first few experiences there were very <BR> positive. <BR> <BR> Today I was asked to come for about four hours while a craft show <BR> and sale was talking place. ... Sat, 21 Nov 2015 23:59:38 EST On blood transfusions and delays... I mentioned in my last blog that on Monday Dr. Gidvani thought that <BR> Danny's hemoglobin might drop enough to need a transfusion in a <BR> few days, so he ordered that the blood be typed and cross-matched. <BR> I'm not exactly sure what is entailed in that, and they certainly already <BR> know Danny's blood type, but evidently that takes some time. <BR> <BR> I personally thought he was crazy. Danny's hemoglobin was 7.9 on <BR> Monday, and that is a good way off from needing a transfusio... Thu, 19 Nov 2015 23:10:50 EST Feeling Sad Danny had a week off from chemo and appointments last week, <BR> which was a nice break. Today when we came in, I was shocked <BR> and deeply saddened to find out that Major Dahmer's husband <BR> had died last Wednesday. <BR> <BR> Major Dahmer is the only RN in the peds hem/onc clinic. There is <BR> also an LVN, but she isn't able to give chemo, so Major Dahmer <BR> does all of it. The doctors theoretically know how, but they really <BR> aren't any good at it because it isn't something ... Tue, 17 Nov 2015 00:33:38 EST Remembering my veterans It is the very tail end of Veteran's Day, and I would be remiss if I didn't mention all the veterans who are/have been important in my life. First, my father, who was an Army officer in WWII, Korea, and Vietnam, and who was a model to me all my life of honesty, integrity, and honor. His brother and my mother's two brothers all served in WWII as well. They are all gone now, but I am blessed by my memories of them. <BR> <BR> My older brother is a veteran of the Air Force, and his wife is a... Thu, 12 Nov 2015 00:34:03 EST What's been happening I got completely snowed under with life since my last posting, <BR> and haven't been able to update regularly with all the details <BR> about Danny with every symptom and what the doctors think, <BR> etc., etc. I record all that here mainly because this is my only <BR> blog where I feel pretty free to say everything I think. Also I <BR> want to have a record of everything because I know I will forget <BR> a lot. <BR> <BR> I had written about an episode Danny had. Since then, he has <BR> h... Sun, 8 Nov 2015 00:09:52 EST Proud Mother Moment My oldest surprised me a whole, whole lot today by announcing <BR> that he had gotten some prizes in a 'short story' writing contest. <BR> Before I could get too excited, he told me that the prize would be <BR> an Amazon gift card. Nice, much better than a kick in the pants, <BR> but definitely right there at the 'don't quit your day job' level. <BR> <BR> Then he shocked me by telling me that these were *two sentence* <BR> short stories. I had never heard of such a thing. Well, as usual, ... Sat, 31 Oct 2015 16:39:19 EST Danny's 'Episode' Danny had a major episode this afternoon, which scared me and <BR> terrified Henry. We had just returned from a trip, and Danny walked <BR> in the front door after me. Henry was still at the car getting stuff. <BR> Danny said he couldn't walk, or something like that, and I said, "I'll <BR> help you, I'm coming," or something like that, and I went to him and <BR> took his arm and we walked a step or two, but then he started crying <BR> and screaming that he couldn't walk. I franticall... Tue, 27 Oct 2015 01:15:06 EST Home from the hospital - hooray! Danny's hospitalization wasn't a pleasant one. Well, they never are, but some are definitely worse than others. He was just miserable the whole time. But when I asked him why he felt awful, or which part of his body hurt, I got snapped at that it wasn't any specific part, he just felt awful. He had a terrible time just getting out of bed and walking to the bathroom. <BR> <BR> In fact, more than once he didn't even make it in time, just because he could hardly walk, and was out of breath ... Sun, 25 Oct 2015 18:21:30 EST Back in the hospital In my last blog I mentioned that Danny's ANC was zero this past Tuesday and that he would have an automatic hospitalization if he were to get a fever. And that he had to return to the clinic on Friday for counts otherwise, in hopes of having next week off. <BR> <BR> Well, we may yet get next week off, but not because of any good counts Friday. And my optimistic and not unrealistic hopes that he wouldn't get a fever were dashed drastically to the ground. Danny actually acted pretty well an... Sat, 24 Oct 2015 01:42:54 EST Week four/blood counts After his chemo last week, Dr. Howell, whose clinic day it was, and I, had decided that Danny would come back on Wednesday of this week for counts. Seemed reasonable to me, one week past his chemo, which would probably be about the time he would need platelets. <BR> <BR> However, to my surprise, the next day I got a call from Mary, the receptionist, to tell me that the doctors had had their weekly meeting to discuss all their patients, and decided that I needed to bring Danny in on Tuesday ... Wed, 21 Oct 2015 00:32:01 EST After chemo week After Danny's week of chemo was over, he didn't have any appointments the following week (October 5-9), partly because all the doctors but one were at the Children's Oncology Group Meeting, so that one remaining doctor was going to be extremely busy, and partly because normally Danny doesn't have any problems or low counts in week 2 of his 4-week chemo cycle. I was reminded to call, though, if I had any concerns. <BR> <BR> Of course I always have concerns. Danny was very tired and week, wh... Thu, 15 Oct 2015 00:50:33 EST Thursday and Friday of chemo week I meant to post this a long time ago. I get so busy and so stressed that I have trouble making time to blog, but it really helps me to do it, so I try to eventually manage to get to it. This is the follow-up to my last post, and the chemo week (in the last post and in this one) was September 28th through October 2nd. <BR> <BR> Thursday is the day of Danny's co-op, and he really enjoys it, if he feels well enough to go. Sadly, he doesn't feel well all that often. But during chemo week, h... Mon, 12 Oct 2015 15:57:39 EST Monday to Wednesday, last week Last week started out pretty well. Danny was finally feeling better after the last cycle, just in time to be slammed again, which is always the way. He did quite well for most of the week, though. The worst effects always take some time before really hitting him. <BR> <BR> Monday he had the usual lumbar puncture. Dr. Hipp did the LP and Dr. Gidvani did the sedation. The plan was originally to measure the initial pressure of his spinal fluid, and then measure the ending pressure. Ho... Mon, 5 Oct 2015 00:50:27 EST Visits with my daughter and my mother I very much enjoyed my trip east, to visit my college senior daughter for Parent's Weekend in Front Royal, VA. My only real regret was that I wasn't able to sign up for the Civil War sites bus tour offered by one of the professors. By the time I tried to sign up, the bus was full. <BR> <BR> I did get to go to the Senior benefit concert, which was amazing. There are a large number of remarkably talented young people at that school. It was well worth staying up until almost midnight and na... Wed, 23 Sep 2015 18:45:27 EST Chemo cycle update Danny had to go in for counts last Tuesday (the 15th), one week after getting the last chemo of the cycle. I was fully expecting him to need platelets, since he always does at this stage. But it was one of those days when everything in the clinic went very, very slowly. :-( There wasn't any real need for us to have been there all day long, but we were nonetheless. <BR> <BR> It was a busy day, and a number of patients showed up all at once, so that was certainly part of it. We had to wait... Sun, 20 Sep 2015 01:35:46 EST Hydrocephalus Tuesday was a regular chemo day for Danny, but since he was scheduled for <BR> intrathecal chemo (given directly into the spinal fluid), the doctors were <BR> going to also measure the pressure of the CSF to see if it was high enough <BR> to indicate hydrocephalus (increased fluid/pressure in his brain), which <BR> was what they suspected since his ventricles have gotten larger and his <BR> pituitary gland is flattened. Plus he has occasional headaches and his <BR> balance is off. <BR> <... Thu, 10 Sep 2015 12:27:33 EST Hearing Test Danny had an appointment for a hearing test this past Monday. It was a routine thing, no big deal, just a follow-up. One of the chemo drugs he was treated with as part of the first protocol he was on, cisplatin, or cisplat, as it is affectionately called (by doctors; parents have no affection for it whatsoever), is known to cause hearing loss. <BR> <BR> In fact, Danny did have significant hearing loss about midway through his first protocol. As soon as that happened, his dose of cisplat... Fri, 4 Sep 2015 00:24:00 EST Thoughts on body shaming I recently read a very thought-provoking blog about body shaming. The person who wrote it mentioned an incident where she was wearing a sleeveless shirt because it was a hot day, Her cousin, with whom she was having lunch, was horrified and said that *she* would never wear such a shirt because a sleeveless shirt would allow people to see her fat arms. The blog writer, which what I consider to be a great attitude, simply stated that she was more comfortable that way. She wrote that, while ... Sun, 30 Aug 2015 18:12:35 EST Good news, with a bit of a caveat Danny's MRI shows no new tumor growth! That is the good news, and such a huge, huge relief. :-) We had to go in for chemo today, and I asked Dr. Whiteway first thing about the MRI. She said she had looked at it, and there was nothing big nor obvious, but that she isn't an expert and could easily miss something smaller. So that was a good preliminary report. <BR> <BR> She also said she expected that the official results would be available later in the day so that I could know for sure bef... Fri, 28 Aug 2015 19:39:31 EST MRI Blues... ...Or, How to Control Scanxiety by Writing a Blog Update <BR> <BR> Danny's MRI was originally scheduled for last week, the 18th <BR> to be exact. It didn't happen then because there was a major <BR> miscommunication between me and the MRI scheduling person. <BR> Don't know how the mistake happened, but the scan did have <BR> to be re-scheduled, for tonight at 7 P.M. <BR> <BR> Fortunately, this time my calendar and the scheduling computer <BR> were in agreement. Unfortunately, the clinic... Fri, 28 Aug 2015 01:33:13 EST Always something Yesterday morning Henry woke me up to tell me that he was in severe pain and needed to go to the ER. Coming from Henry, who is like I was at his age, and avoids doctors whenever possible, that meant he felt very bad indeed. <BR> <BR> So I dragged myself out of bed and took him to Urgent Care, which is closer. In retrospect, he might even have been able to get a same-day appointment in primary care, given how early it was, but Urgent Care worked out well enough. <BR> <BR> It turns out th... Fri, 21 Aug 2015 08:55:46 EST Bad day at black rock When I was a little girl, I remember my mother talking about having a 'bad day at black rock.' I wonder if that was a common expression, since I have never heard anyone else use that term. And my mother has Alzheimer's, so she won't remember. <BR> <BR> In any case, a bad day at black rock is a very good way to describe yesterday. It started out bad, and got progressively worse. And, as usual, poor Danny got the worst of it. I admit that there have been worse days, but this one was right... Sat, 15 Aug 2015 18:44:28 EST How I Almost got a Med Student in Trouble and a Doctor Actually Did On the lighter side of doctors and treatments...a story no one but me may find amusing, but at least it made me smile. <BR> <BR> Danny and I arrived at the clinic a couple weeks ago for an appt., and were introduced to a very nice medical student. Now, my ex-husband is a doctor, and we were married while he went through med school. Thus, I know a fair bit about medical students and the military. In addition, Danny and I have encountered quite a number of med students in the course of his ... Wed, 12 Aug 2015 20:31:01 EST Counts and YL Convention I just lost a very long blog I was almost finished typing. It just vanished. I hate this computer!!! Otoh, it may well be that it was too long and boring. I'll see if I can do a short and sweet recap. Short and sweet isn't usually my style, but there's no way I am going to try to type that much again late at night. <BR> <BR> After the crazy day I last blogged about, we had a period of calm, and Danny continued to do well. Always good when I can say that. Then he had his next chemo, a ... Sun, 9 Aug 2015 00:55:13 EST Tough Day Yesterday was just one of those days. :-( Henry and Cecily had a 10:45 appointment to get new ID cards, which they both need for medical care. So this was a very important appointment. Meanwhile, Danny had an appointment across town at the clinic for 11:00. Since neither Henry nor Cecily could get on base for their appointment without me, short of waiting over an hour and undergoing a huge amount of hassle to verify their appointment at the guard gate, I had to take them. <BR> <BR> So I... Fri, 31 Jul 2015 14:41:12 EST Bianka I usually try not to be a Debbie Downer, but this blog will be an exception. I am hurting badly for two of the strongest, bravest parents I know, and their beautiful daughter. <BR> <BR> One of the greatest supports I have found since Danny's cancer diagnosis has been a Facebook group for parents of children with his type of cancer. In addition, there is a listserv. I have electronically met so many amazing parents from these groups. They provide tons of useful information (things like av... Wed, 29 Jul 2015 02:38:17 EST No news is mostly good news Nothing too exciting has been happening with life lately, and that's a good thing overall. Last week Danny was in Florida with his father, stepmother, and stepbrother. They visited the Disney parks and also Universal Studios. Danny never likes being asked if he had a good time, or how he enjoyed something, or what was his favorite thing. However, I tried hard to keep him from being rude to people who asked him such questions, and I more or less figured out the answers. <BR> <BR> He enjoy... Sat, 25 Jul 2015 00:55:15 EST What else could go wrong? Danny had an appointment scheduled in Houston at M.D. Anderson <BR> this past Monday, the sixth. Dr. Mahajan, his radiation oncologist in <BR> 2013, likes to follow up yearly with the kids she has treated. She also <BR> wants them to have neuropsych testing yearly. Because of that, she had <BR> an appointment for that scheduled for Danny as well. <BR> <BR> Because of the two appointments, I had booked a room for us at the <BR> Ronald McDonald House from Sunday night to Friday morning, ... Fri, 10 Jul 2015 01:00:53 EST Pictures from camp in Colorado I think I am able to post a few camp pictures. Here is a chipmunk enjoying some sunflower seeds on the hand of one of the campers (not us): <BR> <BR> <img src=""> <BR> <BR> Here is a picture of our group of whitewater rafters, those of us who went on the milk run: <BR> <BR> <img src=""> <BR> <BR> Although Danny is in the picture, he... Tue, 7 Jul 2015 16:12:25 EST Catch-up continued The pictures from our summer camp appear to be too big to post on this blog. Oh well, I should have some others later that I may be able to post. <BR> <BR> Getting back to Danny and his treatment, we returned home from having been at camp Sunday night, June 14th, and a new chemo cycle started on June 15th. This was Danny's seventh cycle of this particular chemo regimen. Dr. Whiteway has said that each cycle is different, and she surely is right about that. After six cycles with greater a... Sat, 4 Jul 2015 01:02:36 EST Catch-up So much time has passed since I did a real Danny update that I am going to try to do a brief recap of just the main points. Given my propensity for long-windedness, I may not be successful in the 'brief' category, but I'll try. <BR> <BR> The previous blog entry went through May 26th, when Danny had some chemo, and, although it was a very long day, it didn't go too badly. After that, although his neutrophils (infection-fighting cells) dropped to a very low point, he didn't get a fever so no... Sat, 4 Jul 2015 00:03:28 EST Appointment with neuroophthalmologist Once again I am skipping quite a bit of Danny medical stuff in order to blog about the appointment he had today, which was pretty intense, for me as well as him. <BR> <BR> He had been complaining of double vision quite a lot recently. As it turns out, he says he has had double vision for years, but, until the last two or three months, he was able to control it by thinking about it. So much so that I had totally forgotten he ever said anything to me about double vision. <BR> <BR> However... Mon, 22 Jun 2015 20:35:38 EST Another Anxiety Episode I haven't posted a Danny update in a very long time, mostly because I always seem to be too tired in the evenings when I tend to have more time. I will try to do an overall update of the past few weeks, but for the moment, I will start up afresh with what turned out to be another major anxiety attack. <BR> <BR> Danny is nearing the end of a week of chemo every day. Actually this week has been going quite well so far. He is still eating, although not as much as I might want. Typically a w... Thu, 18 Jun 2015 16:14:19 EST Ankle update Well, I posted back in May (a month ago!), that I had been suffering with an injured and painful ankle. I saw the doctor, who ordered an x-ray and recommended pain meds, rest, etc. <BR> <BR> Well, pain meds didn't help much, and rest was pretty much out of the question. Whether my not following his suggestions was the reason or not, my ankle didn't get better; in fact, it got worse and worse and worse, to the point that I called for another appointment, since we were heading to a week of... Sat, 13 Jun 2015 01:41:49 EST Whew! Today was one of those days when you pretty much come home, throw yourself in bed, and collapse, totally exhausted. It was a chemo day, slightly complicated by the fact that Henry was still in town for the long weekend, and he wanted to come to the hospital with us for Danny's chemo. <BR> <BR> I admit that I assumed that the day would go smoothly. Obviously, that was a bad assumption, but it wasn't an unreasonable one. Danny was scheduled for a lumbar puncture, so we got there early, at a... Wed, 27 May 2015 01:20:40 EST Low white cells Today Danny had a regular clinic visit for blood counts. I wasn't expecting anything too bad, since his counts had been fine on Sunday. In particular, his neutrophils (infection-fighting white blood cells) were relatively high. <BR> <BR> Well, I was wrong. Today his hemoglobin was fine and his platelets were pretty good for a chemo patient. However, his neutrophils were down in the basement. In only four days, they went from the higher end of normal (6700) to extremely low. This means ... Thu, 21 May 2015 20:40:17 EST Alexander has nothing on Danny That would be Alexander, he of the terrible, horrible, no good, very bad day. I actually thought we had had terrible, horrible, etc., days before, but I was wrong. They paled in comparison to the past three days. One day isn't enough to encompass all the horribleness. <BR> <BR> This past week was chemo week, meaning the one week out of every four during which Danny gets chemotherapy every day, M-F. But this one started out being better than all the past ones. Because Danny was taking Me... Mon, 18 May 2015 02:30:40 EST Bad Ankle I don't think I mentioned in earlier blogs that I had an appointment with my own doctor (how bizarre to go to any doctor other than my kids') last week. I really like this guy. He does a whole lot of blood work and then sees areas that might be concerning and encourages his patients to work on diet or exercise or whatever to try to improve the situation. <BR> <BR> I had actually had the blood drawn back in February, but I had had to cancel the original appointment to discuss the results be... Fri, 15 May 2015 01:17:45 EST MRI results I was quite nervous about Danny's MRI results. Dr. Whiteway had put the request for a scan in the system, but when I went in to schedule it a week ago, the first available opening was June 21st. I knew Dr. W wouldn't think that was soon enough, but there wasn't anything for me to do but tell her the date and let her deal with it. So I left a message with the clinic secretary and went my merry way. <BR> <BR> Monday I got a call from the MRI clinic asking me to bring Danny in on Wednesday a... Sat, 9 May 2015 00:49:17 EST Rocky start to the week After coming in for counts last Tuesday, and being started on Megace, Danny still had kind of a tough rest of the week. He was eating a bit more, but not enough more. We had to come in on Friday as well, since we had intended to go camping Friday, sleep out in our tent, and then return home late on Saturday. Dr. Whiteway wanted to make sure his counts were all right before letting us go out of town and probably out of cell-phone range. <BR> <BR> The first glitch in our camping plans came ... Mon, 27 Apr 2015 14:22:31 EST We have a plan Danny has been having quite a few nose bleeds the past several days. Having once been embarrassed by bringing him in to check platelets, only to find out that his platelets were fine and the nosebleed was caused by digital trauma, I wasn't going to call about it, although I admit I have been concerned. Today he got a nose bleed that did seem to take forever to stop, and I was worried, but I *definitely* wasn't going to call, since he had an appointment for bloodwork anyway. <BR> <BR> First... Wed, 22 Apr 2015 00:50:13 EST Last Day of Chemo... ...for the week, at least. Friday was another horrible day. Poor Danny was just so exhausted and sick, and he wouldn't eat (sending me just about around the bend with worry). I had him on a schedule for anti-nausea meds, which actually worked reasonably well, but the whole schedule thing didn't last long. He got some of the meds IV instead of orally, and that made me forget to write down the next time the drug was due. In any case, he didn't need most of the drugs once he was done for th... Sun, 19 Apr 2015 16:34:52 EST Second two days of chemo Unfortunately, the second two days of chemo were not good ones. No two ways about it, the past two days have been horrific. <BR> <BR> The hospital was having a blood drive on Wednesday, and as soon as I saw the signs, I decided to donate. I used to give blood regularly back when I had a 'real' job (sarcasm here). I continued to donate sporadically once I had kids, when I wasn't pregnant or nursing. But I hadn't donated since I got cancer back in 2007. <BR> <BR> At one point I had been... Thu, 16 Apr 2015 20:17:54 EST First two days of chemo Yesterday Danny and I got up early for a looooong day of chemo. I gave him all the anti-nausea drugs that have been prescribed and are compatible with each other: Kytril, Marinol, and two Benadryl. I might not normally give him all four pills, but with four types of chemo, all of which can induce nausea, I figured it was appropriate. <BR> <BR> When we got to the hospital, Steve (nurse) asked what he had taken, and I told him. He recorded it. I was surprised that there didn't seem to be ... Wed, 15 Apr 2015 00:57:57 EST Week of Respite This has been a pretty good week overall. Monday we found out Danny wouldn't have chemo, and he and I have both been resting and recovering since. Well, sort of. I had mailed my taxes to my accountant last week, and this week I had to get my daughter's college financial-aid forms done. They are also due on the 15th. Her college uses its own forms, and I think they are better overall than the FAFSA, but the whole affair is almost as unpleasant as getting taxes done. I plan to get them in... Fri, 10 Apr 2015 17:49:25 EST Quite a Week After Danny had a fever caused by one of his chemo drugs last week (Wednesday night) and got checked out as OK on Thursday morning, I was asked to bring him in on Monday, March 30th for counts. <BR> <BR> His platelets had been fine on Thursday. They certainly should have been, since he had gotten a transfusion on Tuesday. I don't remember, and can't find, the exact number, but I think it was in the range of 60,000 (normal 142,000 to 362,000, and transfusion level below 30,000). Platelet... Mon, 6 Apr 2015 00:56:54 EST Neuropsych Testing Last Monday, the 23rd, Danny was scheduled for a neuropsych evaluation at the hospital. This is a very thorough exam, usually taking all day, which includes, among other things, IQ testing. Kids with Danny's type of cancer are supposed to have one after surgery but before treatment, and then again after treatment. <BR> <BR> Danny had this exam done after his surgery, just about two years ago. (April 5, 2012, to be exact). The IQ result was uninterpretable. Which means that he scored v... Mon, 30 Mar 2015 16:23:19 EST Fevers and lawn mowers Danny had gotten his chemo on Tuesday. Wednesday we spent the day at Randolph AFB, where Danny was "Pilot for a Day." We brought two of his friends with us, and I must say that it was fabulous. They left no stone unturned when it came to fun and exciting activities. <BR> <BR> After that, however, when we got home, Danny was not acting well. He was very, very tired, and his cheek was very red. He asked for food for dinner, but then decided that he didn't want it after all. And he felt... Fri, 27 Mar 2015 01:40:17 EST Allergic Reaction to Platelets After Danny's panic attacks, which were a week ago, and after he recovered so completely, I wasn't expecting to come back to the clinic until Tuesday of this week, for regular mid-cycle chemo. However, about 6:30 Thursday morning, Danny woke me up because he had a nosebleed, which wasn't stopping. It didn't look like a bad bleed, in that there wasn't much blood, but I had it ingrained in me that a nosebleed that doesn't stop probably means low platelets. And low platelets means a trip to t... Wed, 25 Mar 2015 23:35:06 EST Why do I do this to myself? Every single year I vow that I am not going to let the grass/weeds grow too high over the winter so that I won't face a nightmare when I break out the lawn mower. And every single blasted year, I have an epic fail at keeping that vow. I mean EPIC! <BR> <BR> This year things were worse than ever, because we had a good bit of rain over the winter. For some reason winter rain doesn't seem to do much to encourage the grass <BR> to grow, but it does a great job with the weeds. And on top of t... Sun, 22 Mar 2015 23:00:35 EST