Rock Solid

In the words of our surgeon, Dr. Fulp ( whom I must say, I was VERY impressed with),  Hayden was “rock solid” during his procedure.

This morning was very emotional and full of ups and downs, lots of tests, difficult conversations and choices, a lot of confusion — but at 4:00pm the Dr came out and said Hayden was doing well and the procedures went as well as they possibly could.  They were able to place in the biliary drain and the IVC filter successfully and he was breathing well on his own after being sedated.  Now the plan is to wait and see if the drain is effective and allows his liver to function properly and his bilirubin levels to come down.  This process may take several days so he will be monitored closely during this time.

As for Hayden, he is pretty aware, his voice is strong, and his personality seems to be coming back. For those of you who know Hayden well, you know that he is rarely serious, tells inappropriate jokes, and gives me a hard time.   He is doing all of these things, so I can tell he is feeling better and it is now “business as usual”.

For tonight, I’ll take it.

Thank you all for your prayers. Nite Nite.

Shelly

Wednesday March 19th

Today is Wednesday March 19th and is our son’s 4 month birthday!  Happy Birthday Thomas!  I cant believe it has been 4 months already. I know parents always say that their children grow quickly , but I feel like it has FLOWN by since we have been in the hospital for much of his life.   I constantly feel guilty about having him spend so much time in the hospital at such a young age, but my optimistic side  says this is making him more “flexible” 🙂   He is a trooper.  Just like his daddy.  And who knows…. maybe he will grow up to be a doctor 🙂

So here we are, back in the hospital.  the remainder of our last stay at CTCA was full of ups and downs and finding solutions to one problem, which then would cause complications to another issue.   We spent the end of last week battling a low Hemoglobin issue which was thought to be caused by the fluid that we have to pull from Hayden’s abdomen daily.  Hayden was on blood thinners for his clots which was causing more blood to escape and therefore pulling down his hemoglobin levels.  The IV nutrition he was on was causing him to produce more fluid, so we made the decision to take him off IV nutrition (he can eat orally just fine) so that he does not have to take off as much fluid and therefore not loose as much blood.  We also had to take him off blood thinners which is running the risk of future clots, but felt we could not afford for him to continue to loose blood.

We got some good news on Friday in that they are  considering doing 2 procedures that we did not know could be done.  They found a couple dilated biliary ducts in his liver which they can place a stent in to unclog.  We heard back from the liver specialist in NYC and this is the only visable liver issue right now.  The theory is that if we unclog these ducts, the bilirubin level will lower and everything else will fall into place.  They are going to also place an IVC filter in his vein to block any clots from entering the lungs or heart.  We have also reached out to the CTCA in Philadelphia about traveling up there to do a hyperthermia treatment on his abdomen once we get everything else under control.

Hayden was discharged on Saturday after his sodium and hemoglobin levels came up.  He was getting around pretty well at home.  We scheduled a pre-op appointment for today and were here to do that when we were admitted into the hospital again.

You know we always like to start out with the good news — so the good news is that his hemoglobin levels are up and his is not nauseous or in much pain.  The challenge is that his bilirubin, kidney function, White blood cell and Potassium levels have shot up.  He is very lethargic and dehydrated so they decided to admit him for close monitoring in hopes that they can continue with the procedure tomorrow.  Ideally, tomorrow they will unclog his liver without any complications and then his liver, kidney, and other labs will improve.  The white blood cell count rising usually indicates an infection (could even shoot up from a small infection from a cut) , so they are doing cultures to determine the type of infection.

As I am writing this, I pray that the thousands (yes, thousands!) of people who follow this blog will choose to pray for us tonight.   Specifically, we pray that they are able to do the procedure on Hayden’s liver tomorrow without complications and that they are able to get his bilirubin levels down to a normal range.  We are praying for strength, both mentally and physically, and for the guidance of our doctors to help Hayden get on the path to recovery.   And of course, we always pray for complete healing and for the cancer to disappear!

Before I conclude this post, I want to share with you an incredible gift we received from a friend the other day.  I thought this was so amazing and remarkable :

thomashaydensign

Though Hayden’s mom did not initially plan it that way , the meaning of Hayden’s name is “TWIN : VICTORIOUS”.  It is amazing how much comfort I got from this, especially when victory seems so far away.  Hayden has already lived up to his first name, and I know he will live up to the second.  I believe.

Shelly

 

 

Back Home

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. 

 

 

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