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Melinda S in TX

By Melinda S in TX,
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Melinda S in TX

Melinda S in TX

Posted
Posted
It's been a while, and I wanted to update on our family. Life is crazy. We have been in our doublewide for just over a month. The house is a mess. We have been on school break for six weeks. It looks like I may be going to small claims court for some furniture delivery people that damaged our property, hit a tree, run over a water faucet, and left trash all over the yard.

Steven's mom, my number one help and babysitter, fell and severed her Achilles tendon. She had surgery and is healing well, but it will be four to six months before she is anywhere near normal. We have others that can help some, but none are the rock my mil was, so we are learning to do more without help.

Steven is not doing well. He started new chemo twelve weeks ago. After the first four weeks, he had an MRI and the MRI showed the tumor had shrunk 6mm. He had an MRI yesterday (he gets them every eight weeks) and the news was not good. The tumor is two to three times the size it was eight weeks ago at the last scan. The tumor is now spreading to the other side of his brain and has tendrils growing out from it.

As far as treatment, we are grabbing at straws. We knew coming into this, we were fighting a difficult battle. When the gold standard treatments didn't work, the doctor told us that he would keep Steven alive as long as he could and hope a cure or some better treatment would come out in the meantime.

We are getting appointments with the radiation oncologist and the neurosurgeon. If they can help at all, it will only be a partial help. Steven could only have radiation to a small area of the tumor, due to prior radiation, and radiation didn't work before. As far as surgery, they could remove the main body of the tumor, but not the tendrils that are spreading out from it, and it may not be worth the brain damage the surgery would cause. To get all visible cancer, they would have to take out a quarter of his brain.

Steven is staying on the chemo. It isn't stopping the tumor growth, but it is keeping the brain swelling down better than steroids. Steven also wears a Novo-TTF on his head all the time. This is an electrical gadget that puts out a signal to stop the tumor cells from dividing and the tumor from growing. No way to tell if this is helping a little or not at all but we will keep on using it since it doesn't hurt anything. Steven is on a supplement called DCA. This has shown promise in fighting several different kinds of cancer. We just upped his dose yesterday. The new thing the oncologist is throwing at the tumor is an antiviral Steven started today. Steven is also on an antimalarial drug that fights cancer, seizure med, reflux med, antibiotic, vitamins, CLO, vitamin D, coconut oil.

We are hoping the new antiviral will slow the tumor down. If the next MRI shows tumor growth, we are looking at started a chemo "cocktail" which is a mix of five different chemos. This will make Steven severely ill. We're not sure he will make it eight weeks without a major incident (brain swelling, worsening of symptoms) though. The tumor is growing so fast that Steven will soon run out of room in his head. If he doesn't make it eight weeks, we will start the chemo cocktail sooner.

Steven is very sick. He has frequent headaches, severe nausea, weak muscles, joint pain. He is blind on the left side due to brain processing problems, not eyeball problems. He is very fearful and full of anxiety. Just an in general fear, he can't say specifically what he is afraid of. The oncologist gave him a new medication for anxiety and nausea to see if they would help.

Steven is still "working". I read him all the emails and send any emails he needs sent, and basically help him do his job. I don't know why his company has kept him on, but I am grateful they have. They have been such a blessing to us.

Family wise, things aren't going well. I've been mia for most of the last 2.5 years taking care of Hannah and now Steven and things are just falling apart. The children are angry at Steven. It would be different if it was only because of the cancer, but Steven was difficult to get along with before and now it's just worse. Steven is here 24/7 with nothing to do, and he drives everyone crazy with his micromanaging. I am home more now and we are in our own home, so things are some better. I don't want the children to have any regrets, if Steven doesn't make it. Steven knows how they feel. Looking back on things, he would do them differently, but he may not get the chance. Tonight, Steven asked me if when he was no longer here, would he be missed. He asked if he had done anything worthwhile in his life. I'm trying to pull everything and everyone together.

Hannah is doing well and her seventeen months off treatment scans showed no cancer. She is below where she should be in schoolwork due to missing part of k, all of first, and part of second. She is slowly catching up. The only remaining problems from her treatment are slight hyperactivity, scar tissue causing occasional stomach problems, and a tendency to get weak muscles quickly if not strengthened regularly.

I'm ok. I need to work more on my health. Loose weight, lower stress, get more sleep, etc. All of this stress and long hours hasn't helped my adrenal problems. Last week I had a procedure on my legs to close some leaky veins. I'm mostly back to normal.

The last 2.5 years have been the worst of my life, with the last year being super hard. Things are so so hard. So many people have helped us. We can't do it alone. It's almost midnight and I'm starting to ramble, but I just wanted to update and say thank you. Thank you to everyone for praying for us, loving us, helping us. Thanks for everything.
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Liz CA

Liz CA

Posted
Posted

Honey, you must think an elephant is sitting on you with all the weight you are carrying.

I would not give a thought to homeschooling or any kind of schooling right now. Just being together as a family and talking a lot to the children so they can begin to understand a little more and perhaps verbalize their frustrations instead of getting angry. They may also feel angry because they feel helpless since they cannot fix Dad and it's difficult to understand.

Do you have the support of a church or community? This is not something you can handle by yourself. You need more than this board. You need IRL help. People that stand by you, take your children out now and then, spend some time with your dh and you and who are simply "there."

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Laurie4b

Laurie4b

Posted
Posted

Melinda, I am so very sorry.  You are coping with so much. The hospital that is treating Steve may have free counseling for families with cancer. Ours does. That might be a way to help your family come to terms with each other and the situation. Please continue to keep us updated---if only a sentence or two. :grouphug: :grouphug: :grouphug:  and prayers.

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creekland

creekland

Posted
Posted

Tons of :grouphug: :grouphug: :grouphug:  from here.  I'm glad you updated.  I wish there were something I could actually DO to make things better, but knowing how things are going seems to provide a little bit of the sense of sharing. 

 

You're doing an awesome job.  I'll agree with those who say to not worry about formal academic schooling.  Your kids are getting a big (albeit not fun) education seeing life unfold.  There will be plenty of time for the academic stuff later.  I'll add that I think "life lessons" are often more important between the two.

 

May things go well with Steven as these new options are tried, and may your MIL's recovery go well.

 

:grouphug:

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J-rap

J-rap

Posted
Posted

I'm so sorry about this path you have been place upon.  It seems like so much more than one person should have to bear, and as others have said, I wish you had a church network helping you.  I pray for peace and healing during this time.  Don't worry about school right now.  Just keep talking to your kids.  They are getting a very early lesson that life goes much, much deeper than school and birthday parties and all the other things our society focuses on.  I pray that it will help them develop into very compassionate, understanding, wise human beings.

 

Many prayers going your way.

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OneStepAtATime

OneStepAtATime

Posted
Posted

I have not followed your story but when I read this thread I was heart sick.  The fact that you are still going, still working to keep your husband alive and his spirits up, keep your children taken care of and your household, etc. in the face of so much is a testament to how amazing a person you are.  Many would have completely crumbled by now.  I, too, wish I could provide more than words as support.  Prayers and best wishes to you and your family.  So sorry you are faced with this (and the rest of your family, too).

 

:grouphug:  :grouphug:  :grouphug:

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Rebecca

Rebecca

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Posted

I am so so so sorry.

 

I wish I could help you.

 

Is there any practical, tangible thing you need? Your children?

 

When life is hard, it is felt. Not just in the hardship- but in the stress and the turmoil and the children and all the (everyone's) responses.

 

You have been and are so strong.

 

Praying,

Rebecca

 

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Corraleno

Corraleno

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Posted

Is there anything anyone here can do to help??? If you want or need anything, PLEASE post it, no matter how small or trivial — or even large — it may seem. Many people would love to help you in any way we can.

 

:grouphug:  :grouphug:  :grouphug:  :grouphug:  :grouphug:  :grouphug:

 

Jackie

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NorthwestMom

NorthwestMom

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Is there anything anyone here can do to help??? If you want or need anything, PLEASE post it, no matter how small or trivial — or even large — it may seem. Many people would love to help you in any way we can.

 

:grouphug:  :grouphug:  :grouphug:  :grouphug:  :grouphug:  :grouphug:

 

Jackie

 

Melinda, I am wishing you and your family peace, hope, and good health.  If there is anything I can actually do, I would love to help.

 

:grouphug:  :grouphug:  :grouphug:  :grouphug:

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Lara in Colo

Lara in Colo

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Is there anything anyone here can do to help??? If you want or need anything, PLEASE post it, no matter how small or trivial — or even large — it may seem. Many people would love to help you in any way we can.

 

:grouphug:  :grouphug:  :grouphug:  :grouphug:  :grouphug:  :grouphug:

 

Jackie

 

This!  Wishing I was near enough to help.

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