As you know Tristan is now in Texas under the care of the MD Anderson Cancer Center. He was declared terminal by doctors here in SA. After many tests and scans the doctors in the US can find no evidence of the cancer in his spine (which had supposedly spread there from his brain tumour). This is such great news as he now has an 80% chance of survival after he has a course of proton radiation which is not available in South Africa. Unfortunately this is going to cost a tremendous amount of money.
Here is a message received on my friend Mark’s blog written by Tristan’s mom Helen.
Hi I’m the mommy of this little angel. We are in Texas at the moment. In SA dr ‘s told us Tristan is terminal and we must let him go with no pain. We found a hospital in US Texas, M D Anderson. They diagnosed him correctly and can treat. Will get 31 sessions op proton radiation, it s not available in SA. Dr told us 80 persent chance of never coming back. Better than terminal or what do you say! Only problem, proton is $80 000, and believe it or not annestetics $80 000. Then still dr’s costs. My baby has got a chance now. He will live and survive!
Further to this, we got this news on the weekend. It must have been terribly frightening for his parents.
Cancer takes a person on such a roller coaster ride. We were on the top of the world a couple of days ago with the good news and then yesterday the tracks just took us back down to earth….
Tristan has got a VP shunt in his head. After the first tumour was removed a shunt was placed into his head to help with the drainage of brain fluid. Without the it the brain fluid builds up and causes intense pressure in his head. This leads to headaches, vomiting, eyes not dilating and can even cause seizures. Very serious if not treated as soon as possible.
Little Tristan started vomiting yesterday morning before sun rise. At this point we thought it was just baby feeling sick and nothing serious. He went back to sleep. Pierre and myself woke up later and got ready, but Tristan was still sleeping. Eventually I went into the room and picked him up, but He really did not want to wake up. He’s eyes looked very funny and later turned wild and really big. He was very lethargic. I was in tears because I expected the shunt was blocked and it was not part of the plan!!! If he got operated on would this could set back his proton therapy, as the proton dr wanted to start as soon as possible with the mapping and we were fulled with what if’s?
As we were still with our friends Mike and Wendy in Austin, Wendy then raced us off to ER room see a specialist at the DELL Children’s Hospital (built/sponsored by the DELL computer company). To make a long story short, after the Neuro surgeon saw the CT scans that were taken, Tristan was rushed into the operating room before we could even proses anything. The shunt starts in the head and ends in the tummy. I did not want my baby to go through another operation on the head. But like my friend Wendy said: “God has got Tristan’s back”.
The Dr came out and told us that the blockage was only at the bottom of the tube that leads into the tummy and he only had to open Tristan’s stomach and not his head. Thank God again! As this was an emergency we are hopeful that our medical aid should cover this procedure, because it is an emergency of a pre-existing condition. We have overseas cove for emergency’s. They want to observe him for another night and hopefully we will be discharged tomorrow if all goes well. This little setback will not influence anything. Not us coming home or Tristan starting his proton therapy. Which he really needs urgently especially now that we know that it has not spread and we want to prevent it from spreading anywhere!
Please pray for Tristan’s quick recovery and that the pressure in his head goes down quickly. Will keep you all informed.
Lots of Love.
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