I have had a lot of experience with Nathan getting tested for this or that and running over the different scenarios in my head. This (testing Nathan’s bone marrow to see why his counts are so poor) seems to be the first time when NOT ONE of the possibilities is acceptable to me. Sure – we have gotten plenty of news that was the worse-case situation, but we always had hope for the better outcomes.
So – for tomorrow’s bone marrow aspiration, options are all crappy. I went over this a bit on Nathan’s web page but I tend not to speculate there too much due to the very broad audience. I know that some who read that page have found their way here – and that is fine, but I do tend to let more out here.
Not Good – Nathan’s bone marrow has been brought down by the chemo he is currently on. This is one of the only chemos out there that supposedly does not cause bone marrow suppression. If he can’t continue on this – or needs to have more weeks off of it we essentially have to stop treatment on him.
Bad – Nathan’s marrow is chock full of tumor. The tumor is crowding out the good bone marrow and that is why it is struggling. If this is the case – we will probably continue on with the chemo and support him with transfusions and neupogen.
The Worst – Nathan’s bone marrow has failed. All the treatments he has had have killed it and it will not be coming back up. This one scares me to death. We have to stop all treatment and Nathan’s white counts will continue to drop and he would inevitably get an infection and die from it.
All these outcome may point to stopping treatment on Nathan. That might be the right thing but is not something we are ready to do. The most important thing has been Nathan’s ability to live a normal life and be a kid. So – we have to make a choice that supports that goal. If his white count drops too low he cannot go to school or to public places and that is not a good life for him.
So – all options suck. Who knows – perhaps there is another outcome I am not foreseeing. We’ll just have to wait and see.
I want to share a news story with you. It is about a woman who received a kidney from a woman she didn’t know whom she met through Matching Donors online.
This woman used to be my sister-in-law and is a wonderful person. She and my brother divorced a few years ago. I am so happy that her story is having a happy ending/new beginning!
Much debate can happen over the ethics of living donors and what ulterior motive people may have but this is an example of how this can work out for the good of both parties.
I have a fondness for Fisher-Price Little People. As I child I spent many hours playing with them. Now, of course, Little People are not as little because of safety rules.
When Nathan and Julia were toddlers we acquired quite a lot of Little People toys. I think we have so many because I like them so much and I wanted to possess them.
Anyway – they have been mostly put away for a couple of years and now Lauren is old enough to enjoy them. It has been fun to get them out and make a Little People town withe them once again. Nathan and Julia have been having a great time too. There’s nothing like rediscovering old toys, no matter how babyish they are.
By the way – I have to share this flickr set I came across of “old school” Little People”. It brings back fond memories for me.
Me and my sweeties having a wonderful picnic today in some glorious weather.
I have been in this limbo land lately. While I am constantly thinking about Nathan’s condition I haven’t had to really immerse myself into it and have been able to go about my daily business as a mom.
I am starting to get antsy now. Nathan’s platelets are dropping and his doctor swears that the chemo he is on is very unlikely to be causing the problem. I have reached out to the wonderful Neuroblastoma Family and have found one other child who had this happen while only on this chemo (irinotecan). So – I don’t know if it is the chemo or his bone marrow starting to give out from all his years of treatment or from tumor in his bone marrow taking over.
Since we have been doing this chemo we get to feel like we are doing “something”. Luke and I are not at a place where we feel we can stop treatment. We are very conscious of how the treatment effects Nathan and we have promised ourselves we will not put him through anything harsh anymore. It is clear his body cannot handle any chemo.
There are several parents on the Neuroblastoma listserv who are physicians and a few other who are very knowledgeable and they have started taking matters into their own hands. They are attending conferences for neuroblastoma researchers and some have significantly funded research. I have been contacted by these parents (and have met most of them) and have heard their ideas for possible treatments for Nathan. These are things that have shown promise in the lab. I am not sure how I would even go about getting some of these things for Nathan.
I just don’t know if perhaps we should be trying to do more for Nathan. He still feels SO good. He does normal activities and it is so hard to just know we are letting the disease take him. We have fought this for almost four years. We have tried many experimental treatments. We have gone further than some would be willing to go. However – there are those out there willing to go further and we have witnessed it. How do we live with our decisions from here on out. How do we decide what measures are worth doing to buy more time? We have said in the past that we won’t to anything that won’t buy us at least as much good time as time spent in treatment, but we can only guess about that.
I can’t say we wasted our time spending three months in New York last fall but if hindsight were 20/20 no WAY would we have done it. We were told the treatment could be curative. We were told it would be unlikely Nathan’s counts would drop and even more unlikely he would need stem cells. We figured we could go back and forth between Colorado and New York for treatment. We learned a big lesson about clinical trials. They are Experimental!! Nathan was the first child enrolled on the study and so instead of 10 days in New York he spent 3 months. He spent 6 weeks in the hospital and had ZERO neutrophils for over 6 weeks and almost daily transfusions. I could go on about the horrible nose bleeds and high blood pressure. Then there is the fact that Nathan’s disease is far worse after all this. That is the hard part to take.
We definitely made the best decision given the facts but we did get burned and we are afraid to get burned again.
So – I am feeling fairly helpless right now and it is a bad feeling when it is my child’s life I am dealing with. I have been in a similar place before and I think that something will shift soon and it will be made apparent to us what we need to do next. I have a feeling it won’t be a good thing when it happens but if it makes it clear what the best thing is for Nathan I will feel better.
My brother and his wife had a baby girl yesterday. Her name is Jasmine Hope and she was 6 pounds 6 ounces and 18.6 inches long.
I am not sure when we will get to meet her – hopefully in a few weeks.