Hi. It’s Shelly.
So, I have finally convinced Hayden to let me help with the task of “updating the blog”. To anyone who has a blog, I am sure you know that updating a blog can be equally as stressful as it can be rewarding – so being that I am one who is short and to-the-point anyways, so will be this entry 🙂
Hayden has had a great first week in Austria. They performed additional testing, he received all sorts of vitamin infusions and cleanses and received local-regional hyperthermia on his abdomen. He was starting to feel a little better and getting ready for a weekend of sightseeing in Vienna, when Dr. Kleef came in and said Hayden’s bilirubin levels (measurement of liver function) had spiked, which was a major concern. Parker and Hayden made the decision to take the next flight out of Austria and come home so his levels could be monitored at our home cancer center in the US.
We checked into Cancer Treatment Centers on Monday and have been there ever since. Over the weekend prior, his bilirubin had increased even more. High levels of bilirubin can be very dangerous and can be attributed many factors including blockages, influx of various meds and vitamins, cancer growth, clots , and many other things. It was also discovered that Hayden had developed a blood clot in his lungs and several blots clots in his legs so he would need to be placed on an IV blood thinner in order to alleviate these clots. This news made us confident that we made the right decision of bringing him home from Austria when we did — after all, we can always go back.
For several days we have been staying in the hospital. They have been monitoring Hayden’s blood content, nutrition, and bilirubin levels. His levels continue to go up and down and were down this morning. He has had multiple Xrays, ultrasounds, and CT scans to try to get to the root of the issue. Its seems that we have been able to rule out some things but have not found the cause of this spike as of yet.
At 5:30pm last night we spoke to our oncologist to discuss any options we may have for Hayden at the moment.
The great news is that we have confirmed that no progression was shown in Hayden’s scan. In fact, there was even a reduction in ascites ( fluid) in his belly from previous scans.
The only thing that they can figure so far that is causing the bilirubin spike is perhaps a very small clogged bile duct in his liver. This clogged duct was shown on the last few scans, so they do not know why this would all of the sudden be a problem, but it is the only thing that they can come up with.
Our oncologist said that they would usually go down the throat to unclog the duct, but since Hayden had a stent this would not be a good idea and they would have to perform a small surgery to unclog the duct– and even then we are not 100% positive that is the problem. Dr Pabbathi (our oncologist) says that this would be a risky procedure only because Hayden is on blood thinners for his clots and would have to come off them for a week to do the procedure– if the surgeon even agrees to do it.
The other idea is to wait a few days to see what the bilirubin does. As it was explained to me, bilirubin can spike overnight , but can sometimes take weeks to come down.
We have decided to wait the weekend to see what the bilirubin does and approach the procedure next week once Hayden has had more time to be on blood thinners and resolve any clots he may have.
I have sent Hayden’s scan to memorial Sloan Kettering in NYC to be reviewed by my friend’s aunt, who happens to be one of the top liver specialists in the world. Hopefully she will be able to give us some insight over the weekend.
In the meantime, unfortunately Hayden cannot take any chemo as they do not want to overload his liver . It crossed my mind that since his ascites reduced, perhaps something they did in Austria was working. I have inquired with our oncologist of we are able try the local hyperthermia that Hayden did in Austria on his belly as it would not require filtering anything through the liver. The radiology department is going to talk to us about this possibility.
They have put H on a new IV nutrition formula to help with his calories, but not overwork his liver.
As for Hayden , please continue to pray for his comfort and ability to get over this hump. He is in a good amount of pain and requires meds all the time. He is fighting many issues and side effects on a daily basis. The good news is that he has not lost his sense of humor nor his fight— we take it one day at a time.
Thank you for all of the messages, texts, assistance and prayers over the past few days. We have the best group of friends that are so willing to drop anything to help us and we hope that one day we will be able to return the favor.