MARYJEANSL's SparkPeople Blog MARYJEANSL's Blog on SparkPeople, home of free diet plans and a healthy living community My Daughter's Dance My lovely daughter asked me to post a link to a dance she choreographed and performed. She has cerebral palsy as a result of bleeding in her brain because of her premature birth (28 weeks). Nonetheless, she has accomplished a great deal - she is a senior in college, set to graduate in May. She also was the first disabled student at her college to spend a semester in Rome her junior year. <BR> <BR> She has always loved dancing, and always wanted to dance. It has been her dream to choreo... Sun, 7 Feb 2016 15:58:38 EST More on surgery Henry and I saw Dr. Townley today for the real pre-surgery appointment. I'm not really sure what the other one was, when we spent most of a day going from pillar to post and having a bunch of eye measurements made, plus seeing an ophthalmologist he had never seen before. The whole thing seems to have been some sort of random error. <BR> <BR> In any case, today quite a few of the measurements were repeated, which seemed silly, but at least Henry did get to see Dr. Townley, who is the one wh... Tue, 2 Feb 2016 01:32:24 EST Eye Surgery Now that I have a brief break from dealing with Danny's medical issues, I get to start dealing with Henry's. Now, Henry, unlike Danny, is of age (heck, he's 25!), so technically I have no say unless he allows me one. However, he has always let me come to his appointments if I want to. <BR> <BR> Here's the history: back when he was 19, a month or so before Christmas, his eyes started bothering him - they started watering all the time, and I mean all the time. We figured it was allergies, so... Sun, 31 Jan 2016 22:21:12 EST THE Call Well, the pediatric urologist, Dr. Novak, surprised me, <BR> after I had decided that he wasn't going to call me after <BR> all. Yesterday (Wednesday), I made the mistake of <BR> answering the phone ;-) and there he was. I know he <BR> thought I was a total fool. Since I hadn't expected the <BR> call, I hadn't thought at all about what I would say. It <BR> was a very awkward conversation. <BR> <BR> I stuttered and stammered, and I'm very sure he could <BR> tell that I am on Danny's... Thu, 21 Jan 2016 20:49:36 EST Hives I think it was on Saturday that I first noticed some odd lumps (pimples? At my age?) on my <BR> arm and back, but it wasn't anything I paid much attention to. Then yesterday I realised <BR> that I had developed not just a few, but lots and lots of very itchy bumps all over, but mostly <BR> on my left arm. Some on my legs and back, a few on my face and stomach. <BR> <BR> I have had hives before, but not for many, many years. I believe the last time was in <BR> 1984 or -5. At the time I w... Mon, 18 Jan 2016 21:48:09 EST Transition time It seems as though the pediatric urologist either changed his mind about calling us, or got too busy, or something. Someone was home most of last week, Wednesday to Friday. He said he would call Wednesday. He didn't call. Cecily said she didn't get to the phone on time once or twice, but it seems an unlikely coincidence that that call or calls would have been the one he made. And I know he didn't call my cell. So it does seem that Danny may have a reprieve. Otoh, if Dr. N does finally ... Sun, 17 Jan 2016 16:48:45 EST Urodynamic Testing After Danny had thrown a fit about the testing last Wednesday, and refused to have it done unless he could first take pain medication, it was re-scheduled for 8 A.M. yesterday. In hindsight, I wish I had told them that that time just wouldn't work. Neither Danny nor I am good at getting up early, and an early time guarantees a horrific drive during rush hour. :-( <BR> <BR> Sure enough, even though we did manage to leave at 7:10, we got caught in traffic that was stop and start for several ... Tue, 12 Jan 2016 13:47:43 EST Another tough two days, but also some good news Danny and I have had far too many horrible days lately, and we spend <BR> far too much time running from pillar to post dealing with far too many <BR> side effects. I know I do too much whining about my bad days, but it is <BR> cathartic for me, and it helps me keep a record of his treatments, which <BR> is something that I want to do. So, herewith, my latest whine: <BR> <BR> Yesterday (Tuesday), Danny had counts scheduled in the morning, <BR> Cecily and I had lunch scheduled with a fri... Wed, 6 Jan 2016 23:58:51 EST Another Very Long Day Danny had an appointment at the clinic for December 29th, ostensibly just for <BR> counts, at 9. In addition, his sister Cecily had an important appointment at <BR> 9:45 with her orthopedic surgeon. (She has cerebral palsy.) The idea was that <BR> I would take Danny, he would get his blood drawn and sent to the lab, and while <BR> he was waiting for the results, Cecily and I could go to her appointment, and <BR> then return to the peds heme/onc clinic just in time for his lab results to g... Mon, 4 Jan 2016 00:38:42 EST Christmas Eve Again I am behind in blogging, mostly because of my computer problems. No sooner do I get online, generally speaking, than my computer freezes up, and the only way to solve the problem it to turn it off at the switch and start over. That only has to happen a couple of times before I quit in frustration. Grrr.... <BR> <BR> I mentioned in my last blog that Danny had to come in to the peds ward (because the clinic was closed) for a transfusion on Christmas Eve. My goal was to get there by 9... Fri, 1 Jan 2016 21:13:31 EST Not my favorite place to spend Christmas Eve So Danny had gotten a platelet transfusion on Monday, and Dr. Gidvani, who is turning out to be one of those irritating individuals who is always right, thought that I needed to bring him back today, just in case. <BR> <BR> His platelets hadn't been all that bad, and I was just *sure* it was an unnecessary trip. Sigh. Of course we didn't get to the clinic as early as they wanted us - although they didn't call to tell me when they wanted us until nearly 9 A.M. I thought I did pretty well, ... Wed, 23 Dec 2015 19:43:13 EST Last chemo I am so behind in my writing about Danny's journey. I was without my computer for literally weeks while a friend's husband had it. He fixed it, but made some changes which have led to some problems for me. Every time I get online, it freezes up. Sometimes it happens right away, sometimes I get some time to surf the web before it happens. When it freezes up, I get kicked off the internet. Every single time. I don't know which causes which. <BR> <BR> In any case, for all those weeks, an... Mon, 21 Dec 2015 20:29:50 EST Some amusing incidents Last Monday, when we went in for counts, there were a couple <BR> of amusing (to me, anyway) incidents that I wanted to record, <BR> just for myself. And because I always need to smile. <BR> <BR> The psychologist who did the most recent neuropsych exam <BR> on Danny has been coming to the clinic to see us fairly regularly. <BR> Not sure if he thinks I am in such bad shape that he needs to <BR> help me, or if he wants to help Danny, but, either way, he is a <BR> really nice guy, and I l... Sun, 6 Dec 2015 18:44:59 EST Thanksgiving and beyond Wow! It has been a very long time since I have posted anything. As far as myself, I can say that I ate too much on Thanksgiving, and have since been trying to get back where I was on November 25th, with reasonable success. <BR> <BR> Danny...well...there have been a lot of ups and downs, with more downs than ups recently. His problems with encopresis have been horrible, no other word for it, but are gradually improving. <BR> <BR> My last update about his treatment was November 19th. He... Wed, 2 Dec 2015 19:28:36 EST 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