MARYJEANSL's SparkPeople Blog MARYJEANSL's Blog on SparkPeople, home of free diet plans and a healthy living community 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 I am bursting with pride! I have been offline for several days, not because I wanted to, but because the wifi at the motel we were staying at was, for some strange reason, incompatible with my laptop. But now I am more or less back, and I can't resist posting some pictures from my son's graduation. <BR> <BR> <img src=""> <BR> <BR> <BR> <img src=""> Tue, 20 May 2014 22:48:12 EST Tuesday's Truth <img src=""> <BR> <BR> I couldn't resist posting this. So, so true. (But I want to be less fat too! <em>211</em> ) Tue, 13 May 2014 21:53:28 EST Mother's Day/MDA Update This year, Mother's Day for me could have degenerated into a pity party, but was saved by a generous friend who invited me (and another single mother) to her house to celebrate with her and her family. I wasn't looking for presents, or even cards, which my only child at home has no way to get for me anyway, but I did hope to hear from my older two away at college. <BR> <BR> I must admit tha... Tue, 13 May 2014 01:14:26 EST Houston, we have a problem! <BR> Well, Danny and I did NOT get to go to Houston. It seems that I need to do a better job of following the sage advice "Trust - but Verify." <BR> <BR> I got the letter scheduling the appointment for Danny at M.D. Anderson back in October. The date of the appointment was 9 May 2014. Because I trusted MDA, I assumed that he did have an appointment there on that date, and I didn't really even think about it beyond that. However, I never did get a follow-up letter or phone call, and, for... Thu, 8 May 2014 23:47:41 EST Treatment update and more frustration I just realized that I never did finish (not that it's such earth-shattering info) the story about Danny's last appointment in the clinic. I was super frustrated because I had said some things without thinking and it looked like we were going to be more or less forced to come back the following week (which was last week) for a pointless appointment, which would be a waste of time for us and for the doctor. <BR> <BR> However, I also felt I had not behaved as maturely as I try to behave, and ... Wed, 7 May 2014 00:39:48 EST Something serious today <img src=""> <BR> <BR> Needless to say, this is a cause near and dear to my heart. Danny has had brain cancer for 13 months now. We are actually very blessed that his tumor was operable, and that the type of cancer he had/has is potentially curable. Many children and families are not as fortunate. <BR> <BR> He is almost done with all his treatments...just about one more month to go. <BR> But we will never be done with fighting for al... Tue, 6 May 2014 00:18:32 EST Friday's Friends, Romans, Salad-Eaters <img src=""> <BR> <BR> Et tu, Brute? Sat, 3 May 2014 00:39:54 EST Saturday's Spill Avoidance <img src=""> Fri, 25 Apr 2014 21:19:29 EST spades I am finding myself more and more frustrated with Danny's treatments and appointments as more time goes on. We are getting closer and closer to the end of active treatment, and I honestly am feeling like, once he is done, I don't ever want to go back there again, as in, let's skip all the follow-up appointments. <BR> <BR> I quite realize that this is a silly attitude to take, but I am just tired of all the nonsense, and how I am treated. I try not to show it, but I am fairly sure that I ... Wed, 23 Apr 2014 01:17:34 EST Monday's Motivation <img src=""> <BR> <BR> Yes, I admit it. I am a procrastinator! Mon, 21 Apr 2014 23:49:56 EST Friday's Phone Avoidance Technique <img src=""> Fri, 18 Apr 2014 23:11:01 EST Wednesday's What I Tell My Kids <img src=""> Wed, 16 Apr 2014 18:27:39 EST Tuesday's Tiredness <img src=""> <BR> <BR> <BR> I'll tell you what - it reeeeeeally takes it out of me, all this pretending! <BR> Like today - Danny decided he is really a three-year old disguised as a <BR> teenager and got a lot of fun out of attempting to bite the nurses, doctor, <BR> and anyone else he got near, including me. <BR> <BR> I had to pretend I was angry and shocked instead of joining in the fun. <BR> It was awful! And I just collapsed whe... Tue, 15 Apr 2014 22:16:21 EST Saturday's Self-Deception <img src=""> <BR> <BR> Which goes right along with Monday's Moment from March 31st. Memory? <BR> What's that? Sat, 12 Apr 2014 21:05:51 EST Saturday's Satisfaction <img src=""> <BR> <BR> Yes, I am one of those who does do this. ;-) Sun, 6 Apr 2014 00:54:54 EST Monday's Moment... ...which happens altogether too often for some of us.... <BR> <BR> <img src=""> Mon, 31 Mar 2014 23:36:12 EST Saturday's Soft Drink Names <img src=""> <BR> <BR> I'm an outlier on this one, because I have always called them, <BR> "soft drinks," only because that is what my mom and dad called <BR> them. So if I'm weird, it's definitely my parents' fault. Sat, 29 Mar 2014 23:51:23 EST