MARYJEANSL's SparkPeople Blog MARYJEANSL's Blog on SparkPeople, home of free diet plans and a healthy living community Another Catch-Up Blog Life has gotten busier than ever lately, and I am just not doing well at catching-up on things like this blog. I wanted to go back to May and finish the story of our trip to Virginia. <BR> <BR> After we left Cecily's college for the last time, we drove to central PA, where my mother lives. It is always bittersweet to visit her, because she has Alzheimer's disease. She used to be such a smart, caring woman, always busy, and always doing for others, and interested in all sorts of things. N... Wed, 31 Aug 2016 00:45:38 EST I hate cancer! I am very, very sad today. I lost another dear friend to cancer. She was one of the sweetest, kindest people I have ever known. She leaves behind a loving husband, three remarkable children, and scores of friends. If I hate cancer, she is one of the reasons. Rest in peace, Alice. <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> Tue, 23 Aug 2016 19:51:26 EST Non-Scale Victory All my small victories for the time being will be non-scale ones, since the scale I bought online a couple of years ago for cheap, recently reminded me yet again that you get what you pay for. It stopped working. Not the battery, since I tried replacing it. :-( <BR> <BR> I'll probably buy a new scale in the near future, but for now I have no idea of my exact weight. I think I am holding steady, since my clothes are still fitting the way they have been. <BR> <BR> So, today I stopped by a ... Wed, 17 Aug 2016 18:02:58 EST Dd's Graduation - Belated blog from May I got so caught up in life that I never blogged about a lot of things that happened between March and June. The main event of the period was my dd's college graduation. I had decided to do a road trip (from Texas to Virginia) for the occasion. I figured it was cheaper to drive and get inexpensive food and motels than pay for three round-trip plane tickets and one one-way plane ticket, plus the cost of shipping all Cecily's stuff back to Texas. <BR> <BR> It was, overall, a lot of fun, alth... Sun, 31 Jul 2016 00:39:16 EST Murphy's Law Strikes Again! OK, this is a bit much. My AC has gone out, my refrigerator and freezer are both barely cooling the food (the water in the ice trays isn't even freezing completely!), there is a leak in the pipes under my front yard, I got hit by an uninsured driver and have a $250 deductible on the repair (if she had been insured, it would have been zero), and I found out yesterday that my roof needs to be replaced, with a huge deductible ($2280) on that repair. All I need now is for the washer and dryer to... Wed, 20 Jul 2016 22:09:53 EST MRI Results - Mostly Good News I had quite a day yesterday, waiting for the MRI results. I knew Dr. Hipp would call me, because he had said he would, but I also knew that he wouldn't be in any hurry to do so. Dr. Whiteway, for whatever reason, is much more understanding of the stress parents go through waiting for important results. <BR> <BR> I even had to call the clinic because I had lost some important papers, and thought I might have left them in the clinic. When I called, Mary, the receptionist, in addition to tel... Sat, 2 Jul 2016 01:00:42 EST Wrangler Day, MRI Day, and Scanxiety I keep wanting to blog more, but just have so much trouble making time for it. Today is the big day - Danny has his six month's post relapse treatment MRI, and I am a complete basket case, although I am trying not to let him know. Scanxiety has taken over my life. He is doing very well overall, and has no symptoms of a new tumour, but I know very well that bad things can be happening in his head long before any symptoms show up. Which is why they schedule an MRI every three months. <BR> ... Wed, 29 Jun 2016 01:36:29 EST Twenty Pounds Lost! I haven't blogged in forever (well, two months and counting, but it might as well be forever), even though I have had a lot of things I wanted to blog about. I have just been swamped with things to do, and the funny thing is that I haven't even been getting them done. The list of phone calls I need to make (urgently!) never gets smaller, the piles of papers to file never shrinks, the dishes in the sink never disappear (I only wish!), and I continue to feel woefully inadequate to the job des... Thu, 2 Jun 2016 01:21:49 EST Mostly good news Last week Danny started randomly vomiting, while clearly not feeling sick. Monday he vomited twice. Luckily both times someone was quick with a bag or trash can. I had long ago stopped carrying blue hospital vomit bags in my purse. Tuesday we had gone out to dinner at Cracker Barrel (Danny's choice), finished eating, and were about to get up to leave. Danny had eaten something, but not a lot. He never eats a lot, unfortunately. All of a sudden, he leaned over and threw up everything in... Tue, 22 Mar 2016 16:33:59 EST Correction and Clarification I should probably know better than to post a blog, especially when irritated and upset, before I really have full information. Unfortunately, I did just that in my last blog. I found out yesterday that much of what I posted was wrong, if only in part. <BR> <BR> Yesterday Henry went in to repeat the measurement of his corneal endothelial cells. He had been told it would be a quick in and out, just for the measurement, so I didn't think I really needed to be there. Plus I had a lunch date ... Wed, 9 Mar 2016 20:49:30 EST Eye Surgery Blues Henry had to have some more eye measurements done today for the surgery his ophthalmologist has been talking about for some time. It is a relatively new surgery, involving putting a special lens in his eye without taking out the lens he has. Dr. Townley has been talking about it ever since it became clear Henry needed cataract surgery in his other eye. <BR> <BR> The situation is a bit complicated, but it plays out this way. If Dr. T corrected the cataract in Henry's right eye as much as p... Fri, 4 Mar 2016 18:42:33 EST Stomach Flu I am generally very healthy, and almost never get sick. Last year, just like everyone else in the city, it seemed, I did get the flu, as did Danny. He got a lot more attention for it than I did. (Appropriately) <BR> <BR> In any case, the last thing in the world I had been expecting was to get sick. Yes, I am under a tremendous amount of stress, and yes, I rarely get enough sleep, but still I didn't think I would get sick. I was wrong. <BR> <BR> So last night I started to feel unwell aro... Thu, 3 Mar 2016 18:45:52 EST Surgery follow-up Henry had a follow-up appointment yesterday, which was mostly memorable because the doctor told us a number of things that were in direct contradiction to what he had said before. One was that he was going to remove the stitch in his eye at the appointment. Nope. Another was that he was going to use a laser to take off some excess cells he hadn't been able to remove at the initial surgery at that appointment. Again, nope. Not really a big deal, but annoying to have wrong expectations. <BR>... Sat, 27 Feb 2016 18:13:16 EST Henry's Cataract Surgery Last Tuesday (the 16th) was a big day for Henry as well as for Danny. It was Danny's 15th birthday, which is a pretty special thing. Sadly for him, though, it was also the day of Henry's cataract surgery, which took precedence for most of the day. <BR> <BR> Henry had to be at the same-day surgery clinic at 10:30. Parenthetically I add that this was ridiculous. He didn't even get called back for pre-op until well after 12:30, and the surgery ended up starting at about 3:15. But. One doe... Sun, 21 Feb 2016 17:36:31 EST "Ash" Wednesday Last Wednesday I had a near escape from burning the house down. I also am now quite worried about my brain (or lack thereof). One would think that, having lived in the same house for more than fifteen years, I would know which burner on the stove goes with which knob. One would think...and one would be wrong. <BR> <BR> I wanted to make some tea, so I put the tea kettle on the stove, and turned the burner on high so it would boil quickly. That was the idea, anyway. However, the burner I ... Tue, 16 Feb 2016 23:11:03 EST Proud of my daughter again It seems to be a very special spring for my daughter. She writes a blog for a website called Catholic Stand. She doesn't get paid for it, but she enjoys writing, and she figures it is something good to put on her resume. One of her blogs was recognized by some columnist as 'best of the week,' along with fifteen others. For a beginning writer, it was a huge encouragement, and I don't know when I have seen her so happy. It made my day, too, especially since I had not had a great week. Sun, 14 Feb 2016 17:18:59 EST 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