Today was not a good day.
We met with the orthopaedic surgeon to discuss the results of Mathew’s recent tests.
Mathew has a large primary tumour. It is not known if it started in the spine and grew outwards or if it started in the surrounding tissue and grew into the vertebrae. A biopsy will be scheduled as soon as possible – the doctor hopes next week. He wants to biopsy using a CAT scan as a guide to withdraw tissue from the main part of the tumour.
The tumour is about 3″ across. As it is in the vertebrae Mathew runs the risk of breaking that bone if he picks up something heavy or if he falls. That is a concern as his leg has buckled under him, dumping him on the ground. We purchased a cane for him to use although I expect he wants to beat something with it rather than use it for its intended purpose. The nerve in Mathew’s left leg is not working because the tumour is pressing against it.
During the same period as the biopsy the doctor wants a CAT scan done of Mathew’s entire body checking for the occurrence of another tumour anywhere else. There may also be more blood work to do. He is considering hospitalizing Matt for a day or so because Mathew will be put under general anesthesia ~ he won’t lie still for the procedures (can’t blame him; I’d get up and run like hell).
The hope right now is that chemotherapy or radiation can be used to initially shrink the tumour before surgery to remove it. If Mathew is super lucky then perhaps the chemo would shrink the tumour right out of his body. More likely, if it responds at all it will shrink it to minimize the evasive surgery that will follow.
It is hoped that his vertebrae won’t have to be removed along with a couple of discs and maybe small portions of the adjoining vertebrae. The smallest area to cut out is the aim.
Mathew is aware he has a big tumour that is a serious problem. He knows about the biopsy and CAT scan. He was told about the more major operation. He wants to know when and we don’t know.
The hospital doesn’t have any beds. There was an announcement over the intercom today stating all beds were taken. Apparently that announcement comes on every day lately. Additionally this is the time for summer vacation and the hallowed halls are empty. The timing could not have been worse.
Oh yes. And that bone scan? The tumour was on it. It was visible – the Surgeon showed it to us. How did that get missed? That was done 2-1/2 months ago.
There is a word I am not using here. You won’t see it used until after the biopsy and the results are back (we were told it can take 1-2 weeks for the results to come back). Once it is spoken it can’t be undone. We are keeping it to ourselves until the last possible minute. The time will come soon enough when the medical staff’s omnipresence will make it impossible to keep from him.>
Please, PLEASE keep that to yourself too until we indicate otherwise.
Mathew has a different kind of surgery tomorrow. A last minute cancellation TODAY opened up a dental surgery appointment to have his 4 wisdom teeth extracted tomorrow. You are probably wondering at the seemingly stupidity of that however one of those teeth is impacted and it runs the risk of infection. The teeth are causing him pain on top of the other pain. This is the only opportunity he will have for the next several months probably. The surgeon gave the go ahead.
How to feel like a bad parent. Add insult to injury.
People want to know how we are doing. All of this was thrown at us over the last 10 days. I can’t tell you for certain because it depends on the time of day and who is having a good moment and who needs some support. Our priority is Mathew and Kristen and everything else is secondary. Mathew is scared and in pain and wants us with him and so that is where we are. Sometimes when he screams in pain and frustration I have to walk away because it is hard to take after years of being screamed at. John is handling that aspect of that better than I am.
The world didn’t stop. It should have. It did for us ~ the bottom fell out of our world. Why does this child who has suffered so much get this dumped on him? Why, when we were finally having a semblance of a semi-normal life, did we get everything ripped to shreds?
As it is very late and Mathew can’t eat or drink after 9 am…. I am going to bed now. I hate going to bed. That’s when everything is quiet and the day creeps in and all those other thoughts come back. The bad ones you kept away during the day.