MARYJEANSL   80,237
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Update from DC and parts beyond :-)

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.

  
  Member Comments About This Blog Post:

BROOKLYN_BORN 11/26/2014 3:16PM

    I'm so happy that you had a good visit and an opportunity to forget your worries for awhile.

I hope the weather doesn't impact your plans.

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WORKOUTWITHPAM 11/25/2014 3:12AM

    Your trip sounds like a lot of fun. I am glad you are spending time with your family and friends during the holidays. HAPPY THANKSGIVING

HUGS
Pam

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LINDAKAY228 11/24/2014 11:48AM

    Sounds like you are having such a wonderful trip and visits with family and I'm so happy for both of you! I'm very partial to the military since my brother was in it for 20 years total and retired from it. He's 9 1/2 years younger than me, and I remember when he was about Danny's age and our mom had to go for all day testing at a dr's office 3 hours from the town we lived in then. I was already married but I drove both of them and we stayed overnight the night before her tests and the night after. Hers were routine for a specialized weight loss dr she went to at the time who prescribed her a ton of pills for weight loss. That was way before bariatric surgery, etc. So whle she was there I took my brother to a military airplane museum and a few other places while we spent time waiting for her. But it wasn't as great as the one you describe. Enjoy that trip and try not to think of drs and hospitals and things like that till you get back. Just enjoy the time and people and relax!

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Scanxiety

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.

  
  Member Comments About This Blog Post:

BROOKLYN_BORN 11/24/2014 8:50AM

    I'm late reading this because somehow I'm not getting notice of your blogs. That's very good news as was your status post today.

Always thinking of and praying for you.

Eileen

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WORKOUTWITHPAM 11/23/2014 3:52AM

    I hope it works out for you and Danny to make the trip to your Mom's house for Thanksgiving. My thoughts and prayers continue for your family. Take care, and keep in touch.
HUGS
Pam

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LINDAKAY228 11/22/2014 8:41AM

    I am so glad it looks like you will be able to do. Hope your brother can make it too. It will be so good for both you and Danny to get away even if briefly. Have a great time!

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TERRI518 11/21/2014 7:17AM

    I will keep you and your family in my prayers. Enjoy your time with your family and have a Happy Thanksgiving! God Bless!

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Treatment plan

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.


  
  Member Comments About This Blog Post:

LINDAKAY228 11/20/2014 10:17AM

    Thanks for putting this out even if it was hard for you to do. Don't feel bad because you couldn't remember everything because there really was so much to take in. Sounds like a great mini-vacation and I'm glad you get to do that, even if it is close. So good for both of you I think. Glad the same treatment can be done closer to home.

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BROOKLYN_BORN 11/20/2014 6:08AM

    Thank you for the update even though it is difficult for you. As a non medical person this sounds very hopeful to me especially in conjunction with all the prayers being sent your way.

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WORKOUTWITHPAM 11/20/2014 2:25AM

    Thank you for the update on Danny. I think you are doing an excellent job of remembering the details about his treatment plan and other information. You are being very strong in all of this, and I know this has to be such a difficult time. I am keeping Danny, you, and all of your family in my thoughts and prayers.

HUGS
Pam

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Update on Danny and me

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.

  
  Member Comments About This Blog Post:

ADIRONDACKMOM 11/16/2014 8:11AM

    Wow, just now reading this.... prayers to you and your son and family. We just lost my sister-in -law to a brain tumor she was 61 and we shared the same birthday.... she was a blessing to us all, and went home in her sleep. I am hoping you can find the help for Danny that is needed. God bless you and stay positive to keep your health up.

emoticon

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BROOKLYN_BORN 11/14/2014 7:44PM

    Our church family is praying for Danny. I wish we were closer so we could do more for you. emoticon

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LINDAKAY228 11/14/2014 6:51PM

    I am in Arlington TX and Fort Worth borders us. We are all part of the Dallas-Fort Worth Metroplex. Not sure where the hospital he would be is at or if he would have to stay in Fort Worth a little while. The Fort Worth Zoo, ;just as an example, is only about 25 minutes from me. So if you end up in Fort Worth and need a me to be there part of the time for you and Danny just let me know when and where. It's not impossible for me to be there for you. I think and pray for both of you a lot. You as much or more than Danny even because being mothers is harder on us than them! Don't get me wrong, I do pray and think about Danny too and want so badly to see him back in remission and doing fine. Anyway, I think I'm making a mess of what I'm trying to say LOL. But I'm here for you if you need me. To visit him, to take you to get something to eat or drink and listen, or whatever.

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WORKOUTWITHPAM 11/14/2014 1:35AM

    I know this is an especially difficult time for you and your family. I pray that things will work out well for Danny. Remember to take a little time out each day to take care of YOU! Hard to do, I am sure, but really very necessary. I am keeping your family in my thoughts and prayers.

HUGS
Pam

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SPARKED2BFIT 11/14/2014 12:44AM

    all i can say is I'm here to listen and be as supportive as possible. an immediate family member has an incurable form of cancer. it was diagnosed almost 10 yrs ago and I am so grateful that she is still with us. prayers, positive thoughts and my heart... goes out to you and your family. emoticon emoticon

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Tumor subtype results

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.

clinicaltrials.gov/ct2/show/study/NC
T01708174?term=lde+225&rank=28&show_loc s=Y#locn


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.

  
  Member Comments About This Blog Post:

BROOKLYN_BORN 11/13/2014 6:37AM

    Our church congregation is continuing to pray for Danny for healing and for strength during treatment. As Pam has said, Danny is very special to people who have never even met him but know his story through your blog.
Take care of yourself.

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LINDAKAY228 11/11/2014 5:11PM

    I really appreciate you sharing this with us. I can't even imagine what it must be like for you since I've never been through that. I'm not going to pretend I can imagine what it's like to see your child suffer like that and go through those treatments. The only things I know to do for both of you is to let you know I'm here and I'm thinking and praying for both of you. I'm sorry it's not better news. I don't even know you f2f but I feel deeply for both of you from what I've learned of you through your blogs and info. You will make it through this. Hope the meeting goes as well as possible under the circumstances.

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SPARKED2BFIT 11/10/2014 11:12PM

    When one finds out that someone in their family has cancer, it turns their whole world upside down and inside out. sending prayers and positive vibes of faith, hope, strength and courage for your family. keep us posted. emoticon

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WORKOUTWITHPAM 11/9/2014 10:01PM

    THANK YOU for sharing Danny's medical update with us. I know this must be a very hard time for you and your family. Please continue to post here and keep us updated. Danny has become a very special little boy to those of us who have followed his story. I continue to keep Danny in my prayers, in hopes that things will work in his favor.

HUGS
Pam

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BLITZEN44 11/9/2014 5:33PM

    I'm sorry it wasn't the WNT. I am completely clueless as to what Sonic Hedgehog is so I am at a loss to help. I cannot even imagine what you are going through right now. My heart goes out to you and keeping you and yours in prayer. BIG emoticon

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