|Greg – 4 yrs old
A final bone tumor – at least I am hoping it is the final tumor for the summer, and in fact, all of 2014. If I didn’t already know about Jackie’s parotid gland tumor I would be more hopeful to have a few years “off”.
Many of my blog posts have been typed here in the surgical waiting room of OHSU. Today our surgery is a short one – should take only one hour. Greg was taken to the OR suite at about 3:45. Mark and I hurried to eat some dinner so that we could be with him during recovery. They are planning to send him home tonight.
This bone tumor is not a surprise. Quite the opposite, it is the first tumor that we ever found on our children. Just over four years ago we were preparing the family for bed; we knelt for family prayer and then I reached over to rub Greg’s back. I was shocked to feel a large, hard lump and asked Mark to feel it and tell me what he thought. We had not yet shared the facts of Li Fraumeni with the children – at that time we had been counseled to be vigilant, but that they didn’t need the extra worry. This lump was worrisome.
Greg’s response was classic – “Well, if you think that is bad… you should see this one!” He pulled up his pant leg to show us an even larger lump on his right leg, right in the center of his tibia.
Wow! We were not quite so hospital-savvy as we are now and didn’t quite know what to do. We were eventually able to see Dr. Hayden. He had previously removed a tumor from Mark’s shoulder when no one else in the area would touch it. We were so grateful to be in such good hands.
Greg’s diagnosis was “osteochondroma” for both tumors – his growth plate was still open and they said that they could remove the lumps after he had finished growing… in the meantime we should come back in every six months. A few months after this, Greg’s tibial tumor seemed to grow and become more painful. We waited until our six month appointment… and then everything happened very fast. It was an osteosarcoma – a whole new malignant ballgame. Biopsy, blood work, imaging… suddenly we were in the front of every line. They finally implanted his chemo port and we just had to wait a week or so for the site to heal – and just like that – we became a chemo/cancer family.
I am sure that I have already recorded these details… but what about the lump on the back? -They have assured us for years that it is, indeed, just a chondroma – but that it would need to removed someday. The doctors in San Francisco felt that the time had come and Dr. Hayden agreed – so here we are today. It has not been a problem, but there is always a risk that it could become one. We have not worried about it, but it is always there at the back of our minds.
It is about the size of an egg and is attached to his left scapula (shoulder blade). We found out today that it actually wraps around to the front side of the bone as well, so they will need to split one of the muscles in order to get that part – this will slow his recovery a bit, but recovery should actually be relatively easy. I am counting on it!
These photos are from our fun day at the beach last week. They were on my camera that I didn’t want to go find. They christened their ship the “Li Fraumeni” – I thought it was kind of a catchy name. It seemed appropriate. I am always glad that my kids can talk openly about their condition. Right now we have Mark’s brother and his family visiting us from California. As they drove up they texted us – just as a head’s up – that one of their sons is now a vegetarian. We got the message just in time – we were making homemade pizza and dedicated one to mushrooms,onions and artichoke hearts. As we ate my children joked with one another about the texts that they would send to one another as they come to visit…. “Remember that so-and-so can’t be jostled because she just had brain sugery.” “Don’t forget that so-and-so is on chemo and will throw up all over everything – just be ready.” “Just wanted to let you know that so-and-so is still adjusting to losing all of her limbs.”
“Oh, and then Kimberly (negative for Li Fraumeni) will come and tell us all stories about her kids and their sports, etc. and we will think, ‘that’s unusual!'” They were all laughing, and so were their parents. It is best that way.
Speaking of unusual – for once there doesn’t seem to be anything unusual! Our surgeon just came and spoke with us – surgery went well and Greg is in recovery. There was nothing to indicate that this is anything other than a chondroma. (side note – Jackie had a chordoma [rare and dangerous] and this is a chondroma [no comparison]) He kept us in the conference room for almost 30 minutes discussing Li Fraumeni, screening and our family. He wanted to make sure that the correct screenings were continuing to happen and to know if we were all coordinated. I realized that we will need to create a spreadsheet to make sure that everyone is getting their follow-up MRIs, etc. I lost track awhile ago. He said that his clinic will eventually see most Li Fraumeni patients because of the osteo- component. Apparently our family makes up the bulk of their Li-Fraumeni cases – he is the only bone specialist between Seattle and San Francisco that can do these types of surgeries… so we are feeling rare and special.
Mostly I am feeling that I will be glad to get home and cuddle up on the couch and enjoy knowing that, for the time being, I have no more surgeries on my calendar! Let the good times roll…