MARYJEANSL's SparkPeople Blog MARYJEANSL's Blog on SparkPeople, home of free diet plans and a healthy living community 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 Sadness I put as my status yesterday that I was feeling sad. I then intended to say why in my blog, but I was too tired. So now today...and I am still feeling very sad...I am not too tired to type and can explain that a dear and lovely friend of mine died of cancer, much, much too young, and the funeral was yesterday. <BR> <BR> She had the most beautiful smile, and she was always smiling, always joyful. She brightened a room just by coming in it. She faced death with total acceptance, even thoug... Sat, 6 Sep 2014 16:58:44 EST Wednesday's Weigh-in <img src=""> <BR> <BR> Now, why didn't I ever think of this? Wed, 3 Sep 2014 01:22:07 EST Proud Mama I was going to write another blog about how horrible last week was, and I may get around to that in a day or two, but right now I am in Proud Mama mode, and I am going to brag...yes, I admit it...sometimes I am one of *those* mothers. <BR> <BR> Beyond last week, this has been a very difficult summer for me, financially and emotionally. I mentioned a $300 water bill in a previous blog. That crippled me financially for the month of July. My water bills are usually around $50. I figured out... Wed, 27 Aug 2014 20:05:16 EST Tough times I posted as my status a couple of days ago that Monday, Tuesday, and Wednesday of last week had been awful. Well, they definitely were, but, looking somewhat objectively at what happened those days, I can say that, to someone less affected by stress than I am, they might not have been all that bad. <BR> <BR> Here is what lovely daughter was returning to college on Thursday morning, and we had many, many things to do before she could return. The first order of business on Mond... Sun, 24 Aug 2014 18:42:19 EST The summer so far I haven't done much in the way of blogging lately. Things have been pretty tough in a lot of ways - from the $300 water bill, which I am pretty sure I have determined to have been caused by a problem with the sprinkler system this house has - to having to say good-by to my wonderful little dog, Cotton. She was the sweetest, best pet ever. <BR> I cried myself sick that day. But she was going to die anyway, and I just couldn't watch her suffer. <BR> <BR> There have also been some good thing... Mon, 4 Aug 2014 23:37:52 EST Wrangler Day I have been lazy about posting stuff lately. There has actually been a fair amount of stuff happening, almost none of it related to my efforts to get in better shape and lose weight, but still... <BR> <BR> On June 20th, I took Danny to one of the activities the local American Cancer Society offers for kids with cancer. This one was Wrangler Day at Rio Cibolo Ranch. RC Ranch is an entertainment ranch, which is to say that it is a real ranch, but at the same time, they are in the entertain... Wed, 16 Jul 2014 01:06:06 EST Appointment with my new GP I recently found a new doctor, and I must say that I am very pleased with him. I have had an oncologist and surgeon since 2007, when I was diagnosed with cancer, but I haven't had a primary-care doctor. A few years back, a friend referred me to one, but, in the end, neither she nor I was terribly happy with him. He was a pretty nice guy, and I'm sure a competent doctor, but I draw the line at a doctor who has the office staff send you a letter telling you your test results. I mean, I unde... Sun, 6 Jul 2014 23:36:19 EST Questionnaire I have a bunch of blogs just waiting to be written, including one about a day Danny and I spent at a really neat ranch, and also my recent visit to my GP (some good news, some not so good). But CLAIREINPARIS posted one of those 'getting to know' you sorts of questionnaires I used to do a lot of, back in the day when e-mail was new and the earth was young, and I decided to go ahead and do the questionnaire before any other blogs. I hadn't done one in years. So, here goes: <BR> <BR> <BR> ... Fri, 4 Jul 2014 23:41:08 EST Back to the Trenches... ...which, in my case, means the dreaded *lawn!* I have, unfortunately enough, a huge back yard. My front yard is small and manageable, but the back yard is another story. It can't all be mowed in one session, because the mower will manifest its displeasure by stopping and refusing to re-start. Presumably it gets too hot and wants to cool off. <BR> <BR> It mattereth not to me, because by the time the mower wants to call it quits, I have long since passed that point anyway. But the result... Sun, 29 Jun 2014 00:13:07 EST Cancer Survivor's Day at the Hospital Danny's hospital had a huge party last Saturday for Cancer Survivors. It was fifties themed, and there was a costume contest, dance competition, free food for the survivors, door prizes, a raffle, a health fair, etc., etc. When Danny got the invitation, I called to ask if there would be kids there, since I was afraid it would be entirely geared for adults. The lady reassured me that there would be lots of kids there, and that there were plenty of activities for kids. <BR> <BR> So, Danny, ... Tue, 24 Jun 2014 01:23:37 EST Busy Summer I haven't felt that I had much worth posting about since Danny's treatment, with all its ups and downs, ended. But my life is still really busy. Nothing earth-shattering for sure, but busier than I had hoped this summer would be. <BR> <BR> Danny's second follow-up appointment with the specialist at M. D. Anderson in Houston has been re-scheduled. I hope the third time is the charm, since I am more than tired of making motel reservations and plans and then having to change them. The re-s... Thu, 19 Jun 2014 00:52:31 EST In Remission Danny has now fully recovered from his chemo, his subsequent neutropenic fever, and is now *done* with treatment! I think I would be happier about the whole thing if I weren't so tired. <BR> <BR> Dr. Whiteway told me to schedule another MRI for him, and another hearing test, and that would be it for now. Danny is officially in remission. He will be considered to be in remission for three to five years. If, at the end of that time, his scans still show NED (medicalese for "No Evidence of ... Fri, 13 Jun 2014 21:41:00 EST In which I learn the foolishness of making predictions ...and get embarrassed in the process! <BR> <BR> So I had proclaimed to Danny's doctors and to pretty much everyone we know that Danny was going to spike a fever sometime around last Thursday or Friday, and that we would be in the hospital for five or six days. I made all kinds of preparations for this to happen, made sure I had a sub for a job I had scheduled for today, etc., etc. <BR> <BR> So, Thursday came and went, and Danny did have a little fever (99°ish), but, since the magic number... Tue, 3 Jun 2014 18:39:18 EST Graduation Story I never did post a blog about all the fun (ahem) involved in Henry's graduation, or, more specifically, the fun involved in getting him moved out of his apartment. I had foolishly hoped that we could have some quality family time the evening after he graduated but before his sister, brother, and I had to return home. <BR> <BR> Wrongo! Henry had done absolutely nothing to prepare for packing up and moving out of his apartment, not to mention - ahem! - cleaning it for inspection. He and hi... Fri, 30 May 2014 01:16:25 EST Last small chemo = last chemo ever! Today was one week after Danny's last big chemo - big meaning that it entails at least one overnight hospital stay. In comparison, the chemo he got today is one that I consider almost nothing. The name of the drug is Vincristine, and he gets a tiny amount as an IV push, meaning that the nurse injects it directly - and quickly - directly into his IV line. And today was the very last time! <BR> <BR> Vincristine is an interesting drug. It is given because it makes the other chemo drugs work... Wed, 28 May 2014 00:08:50 EST Picture of Danny - finally! <img src=""> Tue, 27 May 2014 00:57:23 EST Last (Big) Chemo Danny's last major chemo was last Tuesday, the day after we had returned from Henry's college graduation in Dallas. To say I was tired would be an understatement. So was he, and so was Cecily, who had flown from Virginia directly to Dallas so she could see her brother graduate. This did not make for a trio of happy campers! <BR> <BR> After avoiding answering three or four phone calls from the clinic, which I knew were 'where are you guys?' kind of calls, I managed to get just about every... Mon, 26 May 2014 21:31:03 EST Memorial Day There is a lot going on in my life that I want to blog about, but this is Memorial Day weekend, and I think that is the priority. <BR> <BR> I have the greatest love and respect for all those who have served our country, both in war and in peace. But on Memorial Day, I especially remember my father, who fought in World War II, the Korean War, and Vietnam. He was a jumpmaster in the D-Day invasion. This picture is of him as a young man, during WWII, 1944. <BR> <BR> <img src="http://photos... Sun, 25 May 2014 23:58:20 EST