Wednesday, December 17, 2014
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.
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. We made it, barely.
Initially he had to have a lumbar puncture, followed by an intrathecal infusion of chemo. In addition, he had five pills of a different chemo drug to take, and a 90-minute IV infusion of a third chemo drug. He took the pills first, then had the spinal puncture. They gave him sedation, which worked really, really well. Which is to say that they gave him the minimum dose for his weight, but he was well and truly knocked out, not just for the very brief procedure, but for two hours afterwards. The doctors tried and tried to wake him up, but his body wasn't going to cooperate until he was ready to!
After that, he got the IV drug over the course of 90 minutes. By the time it was all done, he and I were both extremely tired. A lot of that was lingering exhaustion from our trip. At least that night we both got a decent sleep. And he had seemed to tolerate the chemo pretty well, including the sedation. I admit I was expecting him to, based on how he had previously handled his earlier chemo regimen.
The second through fifth day, the doctors had asked me to give him the five pills at home before coming in, so as to save time, since he couldn't have the IV chemo until at least an hour after taking the pills. In addition, he had to take a steroid pill to prevent irritation of the spinal fluid, an antibiotic to stave off the diarrhea caused by one of the chemo drugs, and an anti-nausea pill.
Tuesday that worked just fine. He took the pills he needed to take, we made it to the clinic without too much trouble, he got the infusion, and we came home. But that was the last of the good days.
Wednesday he woke up miserable and with a low fever (100.5). Then he felt sick and
vomited before I could even try to get him to swallow his anti-nausea pill. Things
went downhill from there. He didn't want to get out of bed because he was too tired,
too weak, too sick, etc. Getting him up seemed to take forever. Then the fight over
getting him to take his pills started.
Two of the pills need to be taken with food. He refused to eat anything. He said he didn't feel like eating, and just looking at food make him feel sick. At this point, I was tearing my hair out. Eventually, I got him to eat some bread and take all the pills but the five chemo pills (which need to be taken on an empty stomach). But the whole process/fight took well over an hour. Then there was the struggle over getting him dressed and downstairs, and into the car. It was not pretty.
We arrived at the clinic at least two hours later than I had planned on getting there.
And, since he hadn't taken the five pills, that had to happen immediately, since he still had to wait an hour afterwards for the next drug.
The whole thing just took forever. He was tired, his stomach hurt, his head ached, and his back hurt. I was worried, of course, but I was most concerned about his getting the chemo he was supposed to get. He did, at long last. He also ended up getting IV fluid, since he was refusing to drink water, and was dehydrated.
Thursday started out a little better, since he said he didn't feel as sick. But things
soon went downhill again. He had all the same complaints as the previous day's, with the added bonus of his being too weak and tired to walk, so I had to bring him to the clinic in a wheelchair. Again it was a terrible struggle to get him there. And getting the actual treatment done took so long that we didn't leave until the clinic had
officially closed at four. And again he had to get IV fluid. And again he refused
to eat. All he had all day was a snack sized bag of pretzels, even though I made him
one of his favorite meals for dinner, at his request. He wouldn't touch it.
Friday was pretty much a repeat of Thursday, with all the same problems, including
the return of the low-grade fever. His backache worried the doctors a bit, one of whom thought it was muscular in origin, and one of whom thought it was related to the lumbar puncture that he had had on Monday. However, we had managed to get to the clinic early enough that we were able to leave well before the clinic closed. Again he ate nothing but a few pretzels, and again he got IV fluids because he refused to drink.
At this point I was wondering, who was it who thought this was a very tolerable protocol? My idea of tolerable would be something quite different from the reality. Of course, every child is different...but that does make it hard to predict how things are ever going to go!
That evening, like the previous evenings, Danny didn't feel well, so he chose to lie on
the rug wrapped in a blanket. And every other evening he had had a low fever. But
not this time. 102.1 Of course I had to call the clinic, and of course I had to take him
to the ER. :-(
Long story short, after blood counts (all looking pretty good; no neutropenia), blood cultures (no bacteria), urinalysis (no bacteria), x-ray (no pneumonia), and an MRI of the spine (no infection as a consequence of the lumbar puncture), we were no closer to knowing why he had gotten a high fever than we had been when we came in. In addition, seven hours had passed, and it was 6:30 A.M. on Saturday. I got zero sleep. Oh, it was just a wonderful experience!
On the good side, even though Danny felt miserable and sick and was still feverish Saturday morning, after he took a nap in the early afternoon, his fever broke and he felt better. I was immensely relieved. But it was not in any way how I would have
chosen to spend my week.
Monday, December 01, 2014
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.
The drive to her college west of DC, which I had thought to be about an hour and a half from Mom's, actually took me almost two hours. This wouldn't have been a problem except that I had promised Cecily that I would be there by 3:45 and it was actually about 4:15. I don't think she was too upset, though, since she was able to introduce me to all the people she wanted to meet me.
I was starving at that point, so I asked her if we could just eat in the dining hall. I didn't really want to drive off campus to find a fast food joint, and I figured the dining hall would have at least something nutritious. She didn't want to initially, informing me that the food wasn't good (what a shock!), but since it was pizza, she wasn't too unhappy.
It was dark by the time we finally got home, but we did make it in time to avoid the winter storm we had been warned about ad nauseam on the radio. I was happy about the whole thing, though, because it made Danny so, so happy. Snow! I was also happy because we were already at our destination and I didn't have to drive in it (much).
Wednesday morning there was snow all over the place, and it was still coming down. Heavy, wet snow. And, mind you, I don't own any boots (who needs them in south Texas?), and all I had brought to wear was sandals and socks. It *never* snows in PA before December at the earliest, right? Of course right! (Not!)
Henry and I had to go out for some groceries we needed for Thanksgiving...along with the entire population of Carlisle, PA. The errand list was unending. Grocery store A, beverage distributor (after which I had to listen to a looooooong rant from Henry about how ridiculous the PA system of selling beer is), dry cleaners, wine and spirits store, and finally grocery store B. It not only took forever, but I managed to soak my socks and feet thoroughly every single time I got out of the car. Luckily I have a strong immune system and was none the worse for it.
That evening I made two pies, apple and pumpkin. In retrospect, I should have probably made only one, since there were only six of us to eat them. Otoh, leftover pie doesn't usually go begging. And the pies really did turn out well.
The next day wasn't nearly as stressful as Thanksgiving usually is when I have to cook. We had plenty of leftover ham, which just had to be warmed up. I made Henry's favourite masked potatoes with chives and cheese, and they turned out very, very well. He made his favourite rolls from scratch (because I refused to without a bread machine), and my bil Ricky made the world's best cranberry relish. We also had broccoli.
Everyone seemed to enjoy the dinner, and even the cleanup wasn't too bad. Henry, Cecily, Ricky, and I, and even Danny enjoyed the meal and the conversation a great deal. We talked and talked and talked. My mom sat there and ate her usual small amount, and said nothing.
Mom is almost completely deaf, and refuses to wear her hearing aid. I understand they aren't really a good substitute for hearing, but her deafness makes it next to impossible to converse with her, even if she didn't suffer from dementia. So we all talked over and around her, and didn't even try to include her. However, she didn't seem at all unhappy. It was a great evening.
The next day was a bit anticlimactic. We ate lunch at a restaurant Henry had liked in the past, and found it to still be very good. We said good-by to Ricky, who had to return home, and we did laundry and packed up.
Saturday morning we loaded the car and said good-by to my mom. It was hard for me. Every time I see her, she is older and frailer and less able to communicate. So I cried a little, and she told us to come back soon. We took some pictures (disposable cameras), and we left. We drove Cecily back to college, then returned the rental car, and caught our flight to Dallas. We collapsed when we got to Henry's apartment and all went to bed early.
Yesterday, Danny and I said good-by to Henry after church, and set off for home. This trip has involved way too many hard good-bys. Especially it was hard for Danny to leave his brother. A few more tears were shed. And then...the normally 4-5 hour trip home took seven hours. Exclamation point! There were too many people on the roads with the same idea we had - to return home. And since we had left Dallas late, we got home very late. Not a good thing, with chemo scheduled for this morning early, but we survived.
Monday, November 24, 2014
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.
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 rain to Dallas. Major slowdowns, too, from an accident and a lane closure...and Austin, which is always a driving nightmare.
Friday night we spent at Henry's apartment, and Saturday we flew to DC, rented a car, and drove to my brother's house. He and his wife have an absolutely beautiful home. Yesterday we spent much of the day at the Smithsonian, at the National Museum of American History. Henry and Danny both love history, and in particular military history. There is a large exhibit on all the wars. We all think it would be better if they would have a separate exhibit for each war, rather than one huge one. But, alas, they didn't ask our opinion. We briefly went through the Star Spangled Banner exhibit. I didn't realize how huge that flag was until I saw it. And I made a point of going to the exhibit of the dresses of the First Ladies. I was disappointed in it. Because of renovation, there isn't a lot of room, and they only display a fraction of the gowns and other items they have in the collection. And I would have preferred if the dresses had been in chronological order. Even so, it was well worth seeing, and I enjoyed it.
After all that, Danny was tired, but of course we had to visit the gift shop and buy him a Christmas present.
Then last night, my brother Jim, Henry, Danny, and I went to my sister's house for a lovely, lovely dinner. Jim is nothing if not lavish, and he had ordered a ten pound ham! For a total of eight people, one of whom didn't come. (Jim's wife Donna had to change her plans because of her mother's illness.) Of the seven left, three don't eat ham. That left four of us to make a dent in ten pounds of meat. Guess we're having ham for Thanksgiving too. Luckily those of us who like ham, really, really like it. I did eat far too much, but there are occasions when I am willing to do that, and this was one.
It was a wonderful dinner. Not only was the food fantastic (and lavish), but it was just so good to be with my family again. I don't get to see them nearly enough. Maybe in a way that's good, because we would probably fight and argue a lot more if we lived nearer.
Today we are heading to New Jersey to spend the day with some good friends, and then tomorrow we are going to my mom's in PA.
Thursday, November 20, 2014
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.
What this means (I trust and believe) is that we will be able to go home (my home growing up, in PA) for Thanksgiving, and not start Danny's treatment until December 1st. We had bought the plane tickets for this trip way back in September, long before we knew about Danny's relapse. Once he had relapsed, we kept the reservation, hoping that it would work out that we could still go.
Dr. Whiteway had said we should go, but that was before we were sure what treatment we would be doing, or on what schedule. Since we only decided on that for sure this past Monday, I still didn't know if we could make the trip. If we do, then he, as I say, can't start treatment until December 1st, a full five weeks from his surgery, so it is longer than we wanted. Dr. W told me that she was OK with waiting until the 1st, and that it would be my decision. I said that I wanted to know the MRI result. If there was a lot of cancer growth, we would start treatment on Friday (tomorrow). If it was stable, then we would go.
Dave does sometimes miss things on scans, so I have to be very careful in making assumptions. I am still going to talk with Dr. W tomorrow morning and make doubly sure that she is OK with our going. But I think we can, and I am very happy!
Meanwhile, my brother is also supposed to come to my mom's, but his mother-in-law is having a health crisis and probably has lung cancer. The last I heard she was in the ICU. If she goes downhill, then he won't be able to come to Mom's. One crisis after another in our family, it seems.
Wednesday, November 19, 2014
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.
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 got that chemo. So we knew him, at least a little, but the main reason we wanted to consult him is that he is a top specialist in the type of cancer Danny has.
The appointment was yesterday (Monday) morning. I was a nervous wreck going in. Danny's dad met us there. He had driven down that morning. Dave and I first talked with the fellow, Dr. Kannan, whom we also knew from last year. I am not sure whether he remembered us, but he at least acted like he did. We told him the situation and explained that we wanted a treatment plan. The way Dave phrased it was that we needed a quarterback.
Then Dr. Khatua came in. Ironically, he didn't seem to remember Danny, but when he saw me, he said that yes, he definitely remembered me. I'm not sure if that says something about me or not. Danny and I both remembered him because, one day when we were there, he was rushing down the hall, and he slipped and fell down hard, leaving long black skid marks on the hall floor. Danny thought it was quite funny, though he fortunately didn't laugh.
Dr. Khatua was very kind, and very compassionate. He did an exam of Danny, and his comment was that Danny's Lansky score was very high. (This basically means that, if you saw Danny, you would never in your life dream that there was anything wrong with him, let alone that he was dying of cancer.) When he said that, Dave burst into tears...and so did I. But he was so kind. He told us about his son who had gotten cancer when he was only three, and said that we are all in this together.
We talked about treatment options, clinical trials that are out there, some that haven't yet started taking patients, and some that have closed. Although there aren't a whole lot of options for relapsed medulloblastoma, there are enough possibilities that it was hard for me, and I think Dave too, to sort through and figure out what would be the best option.
What he finally suggested was that we not actually do the clinical trial, but give Danny the same drugs off trial. I *think* this is the trial that we had talked about in Fort Worth. The big benefit of doing the same drugs off trial is that Danny can be treated sooner, and treated in his regular clinic. We did talk about doing it at MDA, but ended up deciding to get the drugs at home, and go to MDA periodically to see the doctors there and assess progress. I am happy with that. At this point, my biggest concern is that we get treatment started sooner rather than later. The cancer in his brain is very aggressive and very fast growing. And since he is so healthy overall, there really isn't a reason to delay.
I am hoping we can start treatment either Thursday or possibly Friday. This is cutting things close, since we are planning to drive to Dallas on Friday to meet Henry and spend the night there, and then all three of us will fly out of Dallas to DC on Saturday. We will be renting a car and having a mini-vacation before we drive to PA on Tuesday to spend Thanksgiving with my mother and brother. I will also pick up Cecily at college on Tuesday evening, so we will all be together.
So that's where we stand now. I hope this all works out - there may be problems, since neither of the doctors we saw contacted Danny's oncologist here (they were supposed to have e-mailed her yesterday, but it didn't happen). When I called her today, she knew nothing, and I had to tell her the plan myself. I wasn't able to remember all the details, unfortunately, and I felt bad and frustrated, but so many
things were said, and so much information was given, and I just couldn't process all of it, let alone remember well enough to tell her clearly enough.
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