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First Week of Chemo

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.

  
  Member Comments About This Blog Post:

LINDAKAY228 12/20/2014 1:05PM

    I am so sorry for what you both are going through. I read this and just think "poor kid". And also feel so sorry for what you have to go through. One of my grown daughters lived with me until my stroke a year ago, and she started having seizures. I went through so much trying to get her to be compliant with her meds or follow through with the tests. She started with the seizures about a year before I left, which would mean she started about 2 years ago. Dealing with the seizures and realizing that not following up with meds/tests just made them worse was so hard to deal with. Not the same thing at all but just that I know how frustrating it is to try to get them to do what you know has to be done, like getting him to take his meds and get to the chemo even though he doesn't feel good. Sometimes I just felt so helpless and like crying in the middle of the fighting. I don't know if you feel that way but it wouldn't be unusual if you did because of the struggles. Anyway, my thoughts and prayers remain with both of you and thanks for giving us updates, even though I know it's so hard for you to do sometimes.

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WORKOUTWITHPAM 12/18/2014 3:05AM

    I continue to keep you and Danny in my prayers. This sounds so very hard on both of you. I pray that soon this will all be behind Danny, and he can go on with his life as a teenager. Take care, and keep us updated on how he is doing.

HUGS
Pam

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2DAWN4 12/17/2014 11:55PM

    Hugs and prayers to you both! Chemo is not fun...I know......but stay strong and each day embrace the small victories as they come! Take care!

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Thanksgiving

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.

  
  Member Comments About This Blog Post:

BROOKLYN_BORN 12/3/2014 8:13AM

    I'm happy that you had an enjoyable visit with family. I ALWAYS expect snow in PA. I think it knows when I'm coming.

Carlisle - I know it well. My mother worked for the Navy in Mechanicsburg.



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WORKOUTWITHPAM 12/2/2014 4:22PM

    It sounds like a nice (but busy) trip home to see your family. Things do get pretty busy around the holidays, but 'busy' can also be fun. I am glad that you saw your mom, and I know she was glad to see you and your family. I am glad that Danny had a good time, and I wish all of you a wonderful holiday season.

HUGS
Pam

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LINDAKAY228 12/2/2014 7:39AM

    It sounds like there were a few flaws (ha ha) but overall so good to see some of these people again. I saw my own mother get older and frailer and was with her when she passed away. As a service coordinator I also saw so many elderly people with dementia and other age-related problems. Some were in homes of their own, or with family and some were in a couple of nursing homes I worked in conjunction with. So I know what you mean and how hard it was to leave her. Sorry for the complications but so glad that there was so much good in the visit too, which you and Danny both needed. All my best to you.

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PRAIRIECROCUS 12/2/2014 12:00AM

    All the best !

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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:

BLITZEN44 11/30/2014 10:46PM

    Glad you are getting to enjoy some family time and a fun vacation all rolled into one! We had ham and turkey this year on Thanksgiving and I too really enjoyed the ham. I'm not a big meat eater (especially not pork), but for some reason this time it really tasted good. And due to lots of leftovers, like you, I have certainly gotten my share! :) Yumm! Hope you enjoy the rest of your trip and wish you safe travels as you journey home.

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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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