MARYJEANSL's SparkPeople Blog MARYJEANSL's Blog on SparkPeople, home of free diet plans and a healthy living community 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 On a lighter note... So I was invited to my cousin's wedding in North Carolina. My inclination was to want to go, since family is important to me, and this family is scattered all over (one cousin in NC, one in Japan, one in Las Vegas, and one in Maryland). But the invitation was addressed only to me. My sister, who is more knowledgeable about doing things properly/politeness than I am, told me I couldn't assume Danny was invited. That made me hesitate. Danny's dad has recently moved to Longview, TX, which i... Sat, 21 Mar 2015 13:46:04 EST What next? (I did not want to know the answer to that question.) Danny had a couple of weird episodes yesterday that threw me for a loop, to put it mildly. It seems that we have another problem on top of all the other things he has been dealing with. It is an old saying that God never gives anyone more than he/she can handle...there are times, and now is one, when I am not so sure. <BR> <BR> We were at the hospital picking up a prescription when he suddenly doubled over in pain and almost started crying that his throat/esophagus hurt. He also said at o... Fri, 20 Mar 2015 00:17:31 EST So Very Proud of my Son! The last three days of Danny's chemo went pretty well. I was astonished on Wednesday, when, during the chemo, Danny told me that he wanted to go bowling afterwards. And he wanted to bowl six games! <BR> <BR> Danny is in a bowling league on Saturday mornings. This is the third year he has done it. He isn't an especially good bowler, but he does enjoy it. He would have to, to persist as he has, through surgeries and chemo and missing many weeks. Last year he qualified for the Pepsi Tour... Sat, 14 Mar 2015 17:02:59 EST New Week of Chemo This week Danny is getting chemo every day, and we are sort of used to it by now, since this is the fourth cycle of this particular regimen. However, there have been some differences. No two cycles so far ever seem to be alike. <BR> <BR> Also, there were two funny incidents this week, and funny incidents are kind of rare. Monday morning, thinking we had to be there early for a lumbar puncture, we were heading up in the elevator around 8:30, carrying a bunch of stuff. I always come prep... Thu, 12 Mar 2015 02:21:09 EST Correction <BR> <BR> There's always something. Last Friday we went back to the clinic for counts and a talk with Dr. Whiteway. The first thing she said was that it hadn't been white blood cells in Danny's spinal fluid after all. Instead it was the liposomal medium used as a vehicle for the chemo drug (cytarbine) he gets. Thirteen days after it had been infused! <BR> <BR> I asked how on earth they could have thought it was white blood cells when it wasn't. That seemed a very bizarre mistake to ha... Wed, 11 Mar 2015 02:12:28 EST Delays and Ironies This morning Danny seemed to be feeling a bit better than he had the previous couple of days. We headed to the clinic for his scheduled chemo. Before anything else, I asked Dr. Gidvani to look at the bruise on his back where he had had six previous lumbar punctures. He looked at it, pressed it and made Danny flinch, and said that it shouldn't affect today's chemo, assuming his platelets were high enough. <BR> <BR> We had to wait a long time before the LP. Someone else was in the procedur... Mon, 2 Mar 2015 23:12:01 EST Back pain Not a great week for Danny, although it should have been. <BR> The first part of the week he was indeed feeling well, and <BR> back to his old self. Which typically means that he talks <BR> my ear off, usually about his games. And we were on a little <BR> 'staycation,' so we were able to relax a bit more than usual. <BR> However, the weather didn't cooperate. It was wet, cold, <BR> and generally miserable, so we didn't even feel like <BR> swimming in the *indoor* pool. I was also... Sun, 1 Mar 2015 00:57:32 EST Catching up I haven't updated much on Danny in awhile, just occasional status updates. After the long week of chemo every day, which I described in my last Danny update, he had blood counts done Monday and then Friday of that week. The counts were pretty good, given his situation. However, vomiting continued to be a major problem. We got in the habit of carrying blue vomit bags around everywhere we went. And I have many more horrible stains on my carpet than I like to think about. <BR> <BR> In ad... Sun, 22 Feb 2015 01:07:01 EST Vanity Sizing An aunt of mine died last summer at age 102. I never actually met her, although I had met her husband (my father's older brother) once at my grandmother's funeral. They lived all the way across the country from us, and, for whatever reason(s), neither our family nor their family traveled to visit. <BR> <BR> At all events, she lived a very long and largely healthy life. Her granddaughter (my cousin's daughter) has taken on the task of going through her things. She has been posting about i... Tue, 17 Feb 2015 22:48:11 EST How Danny is doing Still don't have the pictures on the computer, so that will have to wait. But I thought I would at least update on how Danny is doing. <BR> <BR> The treatment regimen he is on is very, very hard on him. I am not sure why, but it almost seems to be payback because the initial regimen (which failed, because his cancer recurred) was really very easy on him, and most children have many, many problems with it. I don't, of course, really mean that he is being paid back. Just that it is ironic ... Wed, 11 Feb 2015 00:34:33 EST Recent news Life has gotten away from me recently, such that my blog posting has almost stopped. I am unhappy with myself over this, but it has been tough. Good old Mr. Murphy also got involved...about two weeks ago, I had typed out a long blog and was almost ready to post it...when my computer suddenly decided it had to refresh the page. I lost the entire entry, threw up my hands, and went to bed. <BR> <BR> I hope to be able to update thoroughly sometime soon, but that isn't now. I can briefly say ... Tue, 3 Feb 2015 00:11:27 EST Danny treatment update, part 2 Danny just couldn't seem to get a break. It was a real roller coaster ride for a while. He would seem to be doing well, and then crash back down. Then it would happen again. :-( <BR> <BR> Monday the 15th, when he had chemo again, he seemed to be all right in the morning, in terms of energy and appetite. We got to the clinic at a fairly early hour, I thought, but apparently I was wrong. Somehow they never got around to telling me that they wanted us there at 8 for the lumbar puncture an... Wed, 31 Dec 2014 22:40:44 EST Danny treatment update In the last blog I wrote about Danny and his treatment, I got to the end of the first week of the new chemo protocol. After that, I had high hopes that he would bounce back to his normal self quickly. Unfortunately, my hopes were not realized. <BR> <BR> He was sick and miserable, to varying degrees, every day of the week *after* the big chemo week. The biggest problem was diarrhea, which is a major side effect of one of the chemo drugs (irinotecan). He had taken an antibiotic the previou... Wed, 31 Dec 2014 21:47:15 EST Christmas A lot has gone on with Danny and his treatment since I last blogged about it. I will hopefully get caught up on what is going on with him next time, but I thought Christmas was a better topic today. <BR> <BR> This Christmas was a bit tough for me, since, for the first time since my ex-husband moved out in 2004, he asked to have Danny on Christmas Eve/Christmas morning. Of course I couldn't refuse. He is certainly entitled to have his son on Christmas once in ten years! (Actually, he is s... Fri, 26 Dec 2014 00:30:55 EST First Week of Chemo I have been very neglectful of this blog lately. Partly it's because I have had so much to do, what with Christmas, and partly it's because Danny's chemo hasn't gone smoothly at all, to put it very mildly. I will try to consolidate a whole lot of mostly unpleasant stuff just to start to get caught up. <BR> <BR> After a long drive back home from Dallas and a very late arrival at home, Danny and I had to be at the clinic very early on December 1st to get him started on his new chemo regimen.... Wed, 17 Dec 2014 23:31:32 EST Thanksgiving After an enjoyable, if brief, visit with our friends in New Jersey last Monday, Henry, Danny, and I drove to my mother's house on Tuesday morning. It was very good to see her again, even though she had aged in the two years since I had last seen her. I met her new part-time caregiver, Patti, whom I liked very much. I wasn't able to stay long, though. I had to gas up the rental car and drive to my daughter's college to pick her up and bring her to my mom's, too. <BR> <BR> The drive to her... Mon, 1 Dec 2014 23:55:32 EST Update from DC and parts beyond :-) I just realized I am a bit behind in updating. After the last blog, I did speak to Dr. Whiteway, who confirmed that our DC/PA trip was a go. I am so relieved and happy and grateful to God and to all who have prayed for us and for Danny. <BR> <BR> But I really had to scramble to get ready for the trip. We saved a ton of money by flying to DC from Dallas. Adding in the extra leg to the small airport really adds to the cost. So we packed up on Friday and drove in the intermittently pouring... Mon, 24 Nov 2014 10:45:26 EST Scanxiety After a day of absolutely crushing scanxiety (cancer parent word), stomach in knots, crying at the least provocation, etc., I was soooooooooooooo relieved to hear (preliminary read by Danny's dad) that his MRI looks stable after the surgery. There is no runaway growth, and it looks pretty much the same (0ther than the removal of the large tumor) as it did before the surgery. <BR> <BR> What this means (I trust and believe) is that we will be able to go home (my home growing up, in PA) for Th... Thu, 20 Nov 2014 21:41:11 EST Treatment plan Again I am having a hard time making myself post updates. I am not sure why. Perhaps it is that it seems worse to write stuff down. In any event, I am forcing myself, and maybe it will be therapeutic. <BR> <BR> Sunday Danny and I headed to Houston, to M.D. Anderson, to consult with a pediatric neurooncologist there. Dr. Khatua. Back in April-May of 2013, when Danny was getting proton radiation at MDA, he also got weekly chemo, and Dr. Khatua was the oncologist who cared for him while he ... Wed, 19 Nov 2014 00:14:51 EST Update on Danny and me I am really having to fight myself to post updates about Danny anymore. I am just so sad and discouraged that I don't feel like writing anything. Not that there is a lot of new bad news, but any is too hard for me. <BR> <BR> Let's see...the Novartis trial that is specific for sonic hedgehog tumors is closed. There may be a possibility of getting the drug off trial and giving it to Danny off trial, but the last time I spoke to Dr. Whiteway, she didn't know if the drug would be available. <... Thu, 13 Nov 2014 19:36:44 EST Tumor subtype results After what certainly seemed like an interminable wait, I got Danny's subtype result. Dr. Whiteway called me Friday afternoon. There are four different subtypes: WNT (no idea what this stands for, but we all want WNT, since the survival rate is over 90%), SHH or Sonic Hedgehog, Group C or 3, and Group D or 4. <BR> <BR> The main thing that is known about these subtypes is that they don't know nearly enough. WNT is great, obviously. Danny's tumor is Sonic Hedgehog, and there isn't enough k... Sun, 9 Nov 2014 17:05:25 EST Quick Danny Update Danny came home from the hospital last night. He was pretty weak and tired, and I think, in retrospect, it would have been better if he had stayed one more night. However, he is doing OK. Henry and I took him to the clinic today, since they had in-hospital trick-or-treating for the kids. The loot he got was mind-boggling. We did have him in a wheelchair since he was so tired and weak. <BR> <BR> Even after that tiring afternoon, he was still ready to do a little real trick-or-treating t... Fri, 31 Oct 2014 23:43:45 EST Danny Update Danny had surgery on Monday to remove the tumor that was on his right olfactory bulb. The surgery went well from the surgeon's point of view, although Danny wouldn't agree. He has pretty much been miserable (his word) ever since he woke up <BR> from the surgery. <BR> <BR> There were also a lot of petty annoyances surrounding the whole surgery thing. The pre-op appointment lasted way, way, too long (and what a huge waste of time it was!). One lady - I'm not even exactly sure what the reas... Wed, 29 Oct 2014 20:47:40 EST Moi and the Terrible, Horrible, No Good, Very Bad Day I am sorry it has taken me so long to update about Danny and his MRI results. One can probably tell from the blog title that the news is not good. I have been shocked, stunned, overwhelmed, any other synonym for 'aaaaaaaaaaaaargh!' and I haven't been able to motivate myself to post about it until now. <BR> <BR> I mentioned in the last blog that Dave (my ex-husband) had misread the first MRI scans, so he was even more blindsided than I was, particularly since Dr. Whiteway, Danny's oncologis... Thu, 23 Oct 2014 01:30:34 EST MRI Revisited I could say about MRIs the same thing that was once said about green eggs and ham: I do not like them, Sam-I-Am! Neither does Danny. <BR> <BR> He had a regular, routine MRI Tuesday the 14th. He is generally a very cooperative kid when it comes to such things, but he makes no secret of the fact that he hates them. Not only does he have to lie still in a stupid tube for two hours at a time with lots and lots of unpleasant noise, but he also has to endure a needle stick on top of it. (They... Fri, 17 Oct 2014 11:05:18 EST Friday's Fun Run <img src=""> <BR> <BR> About my speed right now (pun intended) Fri, 3 Oct 2014 22:35:14 EST That Terrible Tuesday A month ago I had posted a status about three terrible days in one week - Mon., Tues., and Wed., the 18th, 19th, and 20th, to be exact. And the following Sunday I posted a blog/rant about how stressful and difficult that Monday was. <BR> <BR> I had always planned to follow up with a blog about the terrible Tuesday and wearying Wednesday (tough to find good alliteration), but I let a lot of time go by. Now I have a few moments and I will record for posterity (yeah, right) how that Tuesday... Mon, 29 Sep 2014 00:20:18 EST Yesterday's Birthday...or should I say Friday's Fifty-something? A year ago I was sad on my birthday because my older kids didn't do anything special for me - in fact, I didn't think they had even remembered. They did eventually both call, and I felt much better. This year I didn't even get a chance for a pity party, which is a good thing. <BR> <BR> My dd called me multiple times, just so we could finish our conversation, and even praised me on FB, which was so sweet of her, all the more that I didn't feel particularly praiseworthy. Danny had worked fo... Sat, 27 Sep 2014 17:36:28 EST Childhood Cancer I want to get a few blog posts that have been simmering in the back of my mind actually written and posted before I get to some about summer activities with lots of pics, and then maybe do some blogging about exercise and improving my life. Or humor. Can't forget the occasional humorous post. We all need a laugh now and then. <BR> <BR> This blog is a bit out of my usual comfort zone. I am not much good at being an activist, even for things that are important to me. However, I do want to... Thu, 11 Sep 2014 20:07:03 EST