How much more can we take?

[poggie]

In addition to dealing with the issues of cancer, we (my husband and I) also have a daughter with a very rare, progressive disease. As a result, she has MANY medical problems as well as being non-verbal and delayed in all areas ( cognitive and physical). We are constantly going somewhere (therapy, theraputic horseback riding, dealing with school issues, doctor appointments...) with her. We also live daily knowing that there is no cure for her disease and that it really is a miracle that she is still alive (until recently children with Alpha Mannosidosis had a life expectancy of 5 years) . Now, all of this happening with my inlaws it is getting us to our breaking point. Everyone calls us to cry on our shoulders but I'm not sure that we can take much more. They don't understand that we may put up a strong front but it's just that, a front. We have been living with heart-wrenching pain for 9 years since our daughter's problems started. I don't want to sound harsh or uncaring because I am not. I love my mother in law as if she were my own mom. I just know that somehow, we need to keep our sanity also for our girls. I would appreciate any advice that is offered.

Here's a cut/paste of my post on the StageIII/IV board about what's going on.

My mother in law has been diagnosed with NSCLC Stage IIIB. Since the thorasic surgeon said that she is no longer a canidate for surgery, we met with the oncologists last week to decide a course of treatment. She decided to enroll in a clinical trial being done at the U of Chicago with the NCI. Part of this trial required that she have a bone scan. (She's already had two CTs and a PET scan with in the last 6 weeks). They told us that this was just a matter of procedure and we shouldn't expect anything to be found. The doctors seemed pretty possitive.

The test was last Friday and yesterday, the nurse called and said that there are spots on her leg and spine that they don't like. She had to go this AM to have X-rays done. The nurse said that it could be arthritis or tumors but they won't know until after the X-rays.

With all of the other tests that she's had done, shouldn't someone be able to tell cancer from arthritis? It's just so frustrating!

She was scheduled to meet with the radiation oncologist today but they cancelled that appointment. If the X-rays show that it's not cancer, she will see him tomorrow. We don't know what the next step will be if it does show cancer. I guess that I'm thinking the worst since she doesn't have any pain anywhere! If it were arthritis, I would expect that she would be in some pain.

Now, we have no idea what if anything they will be able to do to treat her. Up until this point, she has had a possitive attitude. It's getting hard to stay focused and possitive. It seems that with every test, we get more bad news.

This has been going on since Sept when her chest X-ray came back abnormal. Things were going so slowly with her doctors in the suburbs that she switched to U of Chicago last month.

Where do we go from here?

Mother in law~~71yo non-smoker diagnosed Nov'03 NSCLC Stage IIIB

[DeanCarl]

Poggie,

I answered your post on the Late Stage NSCLC board so I'll leave that for there.

I worked with severely devolpmentaly delayed kids for about 10 years so I KNOW what your talking about. I, luckily, could go home at the end of the day. But the parents had to deal with the problems all day, EVERY day.

I don't have any "magic wand" to wave, but a couple of things come to mind. The first and formost is to find some way to give yourselves a break! Is there any kind of respit care in your area? Someone who's qualified and could take your daughter for a day so you and your husband could get away? The school I worked for here in San Diego had a program like that. It would work wonders for the parents.

Secondly (and this is a tough one) lean when and how to say "no". I WANT to help. I WANT to be there for our loved ones. But sometimes, as I've found over the years, I just can't. If I wait too long to "recharge the batteries" I end up either blowing up or getting depressed, neither of which helps anybody. So I've learned when it's time for me to say "no" even though that might be painful at the time. It always works out better in the long run.

Here is hoping for the best for your Mother in law and you daughter. They don't call them "special" kids for nothing! They realy ARE special!

Dean

[Guest canuckwebgrrl]

Poggie,

I don't think there's anything to say that hasn't already been well-said by Dean. I just want to add my support to his.

[poggie]

Thank you both for your support. Things are worse today for my mother in law. The x-rays confirmed cancer in at least two areas of the spine as well as a questionable spot in the right hip. We have a family meeting tonight with a conference call with the doctor. We have told my mil and fil that we will support what ever choice they make but my brother in law wants them to take a vacation and enjoy whatever time left that she has. He's against chemo/treatment for the most part. He thinks that it will debilitate her to the point that her quality of life would be horrible. Even now, she is very active and in NO pain at all. Only an annoying cough every now and then. The doctors want her to participate in a different clinical trial with a drug called ABT-510 in addition to chemo. If she does, she will need a MRI of her brain tomorrow. They need to double check that there are no mets there before she can have ABT-510. She's not sure that she wants to know if there are any in her brain. Both CTs were clear as was that area in the PET scan.

We also have two older girls (17 and 14) that are very helpful with their younger sister. We do get a night out every now and then and it helps. We haven't told them the complete news yet. Only that grandma has cancer and that we're exploring her treatment options. Until we know what she wants to do, there's no point burdening them with all of the details. We love our girls to death but sometimes are tired of being "special". We just want to be 'normal'~~whatever that is.

Again, THANK YOU!

[Guest Karen C]

Hi - Dean sounds like he's got great advice.

Just want to add my support to you. You must feel like you've gone through the ringer. hang in there.

It sounds to me that if your mil is a strong and healthy person that treatment might really benefit her, and her quality of life might not be so bad. she can do that and still take the vacation, perhaps.

God Bless you, your beautiful daughters and your entire family,

Karen C.

[DeanCarl]

Poggie,

This may sound a bit ironic comming from someone who has decided not to go through chemo and other aggressive therapy .. but .. make sure your Mil understands they have a lot of ways to lessen the side effects of chemo now days. And everyone reacts a little differently to the chemo in the first place.

That's not a push for chemo. Just a couple of things to think about.

And, yes, this IS a difficult time. When I went through the "diagnostic, what do I do NOW" phase I had times when I would have had to take out my driver's license just to tell you what my name was.

And, while we're at it, would someone explain to me what "normal" is? I've been trying to figure THAT one out for a whole LOT of years!

But I do know what your saying, Poggie. Just a week, or even a day, without having to work around, or even think about, developmental problems, or cancer, or whatever. Wouldn't THAT be nice? But that's not the hand we were delt. And we can only play the cards we have. So we do.

There is a wonderful little story I read at the school where I worked about a family that headed off on a trip to France, but, due to "technical difficulties" ended up in Holland instead. They could have gotten all upset about not being in France. Instead they decided to find ways to enjoy Holland instead.

Dean