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.
Thursday, November 13, 2014
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.
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.
There is another clinical trial that has had some good results for some children. The closest location for that trial is in Fort Worth, which isn't impossibly far. There is an antibody trial in New York at Memorial Sloan Kettering, which is another possibility, but at least one of the experts we consulted doesn't think that should be the first thing we try. Targeted radiation is another possibility.
The new bad news is that Danny's new tumor is anaplastic (undifferentiated, wildly dividing cells). There was an area of anaplasia in his first tumor, but it wasn't enough to put him in the high-risk category. Now I wonder if it would have made a difference if he had had the high-risk treatment rather than the standard treatment. Dr. W doesn't think so, but she doesn't really know. And she may just be saying it so I don't feel worse about things.
We do have an appointment on Monday at M.D. Anderson to consult the neurooncologist there. Danny saw him weekly a year and a half ago when he was getting proton radiation. I didn't like him much then, but I have changed my opinion after talking to the mother of one of his patients. She told me he cares deeply and is very compassionate. He went into pediatric oncology after his own son was diagnosed with cancer. I desperately need compassion and hope.
After that, Danny will get a follow-up MRI on Thursday to see what has happened in his brain since the surgery (October 27th). Then we will go east to spend Thanksgiving with my family. I am so anxious to start treatment that I worry about leaving town, but Dr. W said it would be OK. Hopefully that won't be too stressful.
In other news, I signed up to do a research study investigating a new omega-3 supplement. It will bring me a little much-needed extra income. I already take an omega-3 supplement, but I will get a different one for the study. As part of the study protocol, I had to be weighed, and I found that I had lost five pounds. I guess that's my tiny little silver lining from all this. I am at the lowest weight I have been in probably at least seven years.
Sunday, November 09, 2014
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.
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 knowledge about it. I would have to say the same about the other two groups. Danny's individual tumor, in any case, regardless of subtype generalizations, is a very bad one. Recurrent and fast growing. Not good.
However, knowing the subtype gives us enough knowledge to decide on a treatment plan. There is an open clinical trial at M.D. Anderson in Houston, among other locations, for kids with recurrent medulloblastoma of the SHH type. Assuming Danny qualifies, which I think he will, then that is what we will be doing.
Here is the actual study info. Most of it doesn't make sense to me, and I think I know more medicalese than most. I have only skimmed it so far. Henry noticed (and I didn't) that it appears to be an oral medication, which Danny will certainly appreciate.
I hope the link works. I constantly have trouble with this on SP.
The hard, cold reality, though, is that, while there is a good chance Danny's tumor will respond to this targeted drug, there is also a good chance that the tumor cells will develop resistance. I know this. I have lain awake night after night, unable to stop myself from imagining the worst.
So I am adding in at least one alternative therapy at this point. It has the benefit of being completely harmless, so if it doesn't work, at least it won't hurt anything. There are others I will consider, too.
Meanwhile, Danny's dad and I are meeting with Dr. W tomorrow to discuss details. I admit I am anxious to find out a time frame. I have to deal with my very part-time job, which someone else has to do if I can't be there. I very much need to know when we have to go to Houston so I can start looking for a sub.
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