My son is home!!! Now he faces surgery again.

This is an update for those who have joined in with the short lived celebrations of my son coming home and to ask all of you once again for your prayers.

All I really want to do is scream - my son was given his scan results on Monday 20th to be told that he requires more surgery, this time to remove 2 tumours - a brainstem tumour that has grown 3mm in 4 months and measures 2.9cms and a tumour with a cyst, that has also grown, situated right beside the brainstem tumour - so having come home from his last surgery and rehabilitation on the 3rd July he is to return on the 3rd August for surgery on the 4th - no they aren't hanging around.

The last 12 months have been relentless - I am not sure just how much a body and mind can take - this has knocked him and us againest the wall - please someone tell me that it can get better, that people do recover from 4 major surgeries to remove 3 brain tumours and 2 spinal tumours, 1 minor surgery to remove testicular lumps and 6 weeks of radiotherapy in 12 months???

Then I read my last post (below) - celebrating all that has been acheived - now I want to cry, not just scream. VHL is insiduous it creeps into your life and steals your health slowly but surely, little by little.

Pray for him...........please.

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Just a quick and really happy post - my son came home on Friday after being in hospital then in neuro rehab since the middle of March!! :o)

Not out of the woods yet but certainly a little closer - thank you to all of you for support and prayers. Next hurdle is an MRI of the brain on the 20th July to see how a brainstem tumour and a tumour with a cyst in the cerebellar are behaving.......................

But for the time being we are celebrating - our son is home, he is walking with the aid of a frame or crutches around the home and using a wheelchair when out - back in March we thought surgery would leave him paralysed from the waist down - before surgery he wasn't able to get out of bed unaided, unable to take a single step, he couldn't feel or move his left leg!

:o)

By Myway
Posted July 23, 2009 at 6:20 am
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Thank you for reading my post.

Onward and upward - I wish - I pray, if you are reading this you may have read the update on my sons scan results on the 20th July............

By mkj
Posted July 23, 2009 at 8:23 am
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I feel your pain. Over the past three years, our son has had surgery every six months and they just keep coming. They seem to grow even faster after every surgery. I am starting to wonder if recovery from surgery spurs capillary growth to promote healing in the surgical wound and at the same time causes existing hemangioblastomas to grow wildly in response as well.

You are correct Myway VHL is absolutely insidious. I hate what it has done to my son and only wish that I could take it out of his body and put it into my own.

By TinaDiane
Posted July 23, 2009 at 9:59 am
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I think we all share your anguish. VHL is a road of long uphill battles, with short respite. I will pray for your family and for your son to be strong enough to do what it takes, emotionally and physically.

xoxo
Tina

By live
Posted July 24, 2009 at 1:33 pm
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You have to keep in good spirits. I had a brain tumour removed, got back home did'nt feel too well and found out that one of my kidney's needed to be removed a month after the brain op. All this after a cryo treatment for the eye a few months before. All I had was my spirits.

By joyceg98
Posted July 24, 2009 at 5:16 pm
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Take a deep breath. It might be worth it to get a second opinion from a VHL expert before proceeding with another surgery so close on the heels of the other. If the surgery is not urgent, it could be that he could have a bit more time to heal.

Also, be sure to focus on nutrition. Whenever we see people having multiple surgeries in a short period of time, it is critically important to make sure your vitamins are in good supply and your immune system is strong. When your body is weak or stripped of vitamins, more new tumors are likely to grow. So take the time to focus on good nutrition -- fruits, vegetables, etc.

If he doesn't feel like eating fruits and vegetables, see if he would eat them put through a juicer. You can drink more veggies than you can eat, and those vitamins are truly essential.

And keep your chin up! Your discouragement will be discouraging to him, and it's important to keep both your spirits strong. There's a lot we can't do anything about, but we CAN DO rehab exercises and good nutrition. Put the focus there on those forward steps.

If you feel like it's not worth doing the rehab because the next surgery is going to set you back anyway, remember this: the better shape you are in going into surgery will speed the recovery and recuperation after the surgery. Cardio-vascular strength, and muscle strength, are both important to healing.

Best wishes,
Joyce

By karenga01
Posted July 25, 2009 at 9:59 am
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My prayers are with you and your family. You sound like what I went throught in 2007. Three major surgies in one year. Two of them were eight weeks apart. They were both in the brain. I did have to go through OT/PT theraphy after the second brain surgery for about three months, three times a week. I did have a very impotant reason to get moving quickily. One week befor I went to NIH for a routine check, my husband & I were matched with a birth mother. What a blow to be told that I was having surgery,but that was ok. Six weeks later here come new more intense symptoms. By the eight week I'm back for surgery at NIH. Scared that the agency/state won't let me adopt this child. As you can see It does all work out. We just go through time where it just sucks! I will always say that I wish 2007 never happened.

By Myway
Posted July 29, 2009 at 7:03 am
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A deep breath taken.........again!

My son's next surgery would appear to be quite urgent, as he is symptomatic, presenting with occassional problems swallowing, he has choked on food, not always able to catch his breath, when he is tired he slurs his words, his balance has never been good, and with all the mobility issues he has at the moment it is difficult to gauge any changes, he gets light headed and dizzy when changing elevation, eg sitting up in bed or going from sitting to standing, occassional vomiting, and slight headaches combine all this with extreme tiredness and we have all in all not a good situation to be in! His consultant feels that with these symptoms and the growth of a cyst (with a small tumour) and the brainstem tumour (both of these are side by side) that waiting isn't an option.

Nutrition - my son really only wants comfort food, but we don't always get what we want!! I just about manage to get his five a day into him, along with multi vitamins with probiotic and also, just for good measure, Manuka honey! Everything I cook is made from scratch using the freshest ingredients available. I am always open to suggestions though - and read about the benefits certain foods offer in the hope that I may stumble across something that may sort VHL out!

Mmmm, rehab exercises! Something of a battle as I mentioned above, my son is continuously tired, sleeping alot - I try to keep the exercises going - but not always with great success!

Keeping our heads above water? Yes, as a family we are - just sometimes you need to sound off to folks who you know understand - who have been there, faced the same battles and up hill struggles - listening to their/your courage, determination and offers of support - THAT is what helps to keep our heads above water! We are looking on the positive side that after this piece of surgery there are no more brain or spinal tumours that look threatening - there are plenty of little ones throughout his CNS but hopefully none that will require any attention for quite sometime - but with VHL..............who knows?

So once again - thank you!

By joyceg98
Posted July 30, 2009 at 5:20 pm
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Sleepiness can be a symptom, and since he is having symptoms be sure to add that to the description you are sharing with his neuro people.

Good job, Mom, with the nutrition! And in this situation, be sure to remember that you can juice fruits and vegetables to make them easier to eat.

I hope he gets this difficulty behind him soon. With such good care at home, he is sure to do well.

Best wishes,
Joyce

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