A Hard Day

We have had some hard days, especially two days ago on Friday.

We decided to have a permanent line put back into his body. Remember how his port had to be removed a week and a half ago due to infection?  His PICC line (think of a semi-permanent IV with two tubes coming out just under his armpit) stopped working and we needed to do something else.  We felt like it had been enough time for the old infection to clear with antibiotics...so onward we moved!

We decided to go with a Broviac over a port.  The details of why aren't really important, but think of a Broviac as a permanent IV surgically implanted into a major artery and comes out of his chest and has two tubes that look like the end of an IV.  Or you can google it.  The port required a needle being stuck into Case's skin and had to be changed weekly; the Broviac doesn't require that and it seemed nicer.

So Friday morning, still admidst our mourning our bad news, he went in for surgery.  These are usually minor and are day surgeries, but Case was admitted after for observation and because we had hopes of starting our new chemo regimen.  Surgery was successful.  Hooray.

Within a few hours Case's belly had grown very swollen, he had a crazy fever, and now his Broviac wasn't working (as in you couldn't get blood out of it).  An x-ray showed that the end of the tubing came out of the artery it was supposed to be in.  It would need to be surgically repaired, and it would have to wait until the next day...which means no chemo.

I pitched a fit, which resulted in Case going in for a SECOND surgery Friday night.  The hopes of repositioning the end of the tubing failed and a whole new Broviac had to be placed in. At 10:00 pm, Case woke up in the ICU due to wheezing and not being able to breath well on his own.  Well, that's not a surprise seeing as how he has been sedated FIVE times in one week, with three of those being all withing 32 hours of each other.  And each sedation required a hard plastic breathing tube down his throat.

So we started chemo at 2:00 am Saturday morning in the ICU.   The ICU is a wonderful place where vitals are checked hourly, day or night.  One of these new chemos is an oral medication.  17 mL of fluid being flushed into Case's mouth, who doesn't eat, at 2:00 am was such a pathetic disaster. So now our baby has another tube (NG) up his nose so that the chemo can be flushed into his stomach daily.

It just never ends for our Case.  He is having severe stomach cramping, of which we don't know if it's caused by the chemo or by the tumors in his belly.  So he is on morphine, and still requires oxygen.  In the words of a dear friend, "We are a HOT mess!" Oh yeah, and he has a bit of fluid on his left lung.  Seriously.

We just really need this new chemo to stop any new growth.  If so, we can possibly entertain going back to MIBG therapy in San Francisco.  We know many people are fasting and praying on our behalf and we thank you all for that!  We surely need it.

A River of Peace

I wanted to share an article in our church's magazine that gave me some comfort called "A River of Pease."   Click here to read the article.  It is written by a mother who lost her son in a car accident. She describes how she can understand that there is a purpose to the pain, even if she doesn't know that purpose right now.  Read the article...it's really short and really sweet.

I can say that underneath the miles of pain that I feel, I truly feel a river of peace because I know that my Heavenly Father has a very specific plan for what is going on and He will help us through it.  I know that in the next life I am still Case's mom and will always be.

I won't lie...watching Case go through this and imagining life without Case is more unbearable than can be imagined.  Remember the last time you had a major case of the butterflies in your stomach, and remember the last time you had that awful pit in your stomach? I have both of those inside me at all times...and that's on a good day. Bad days can't be described.

Yet I have to keep going.  My favorite quote in that article is the following:

The greatest gift we can give those on both sides of the veil is to move forward with our heads held up in faith and hope in Heavenly Father and Jesus Christ, even if each step is taken with tears streaming down our faces. For we are promised that “the grave hath no victory, and the sting of death is swallowed up in Christ” (Mosiah 16:8). One day “the Lord God will wipe away tears from off all faces” (Isaiah 25:8).

How beautiful and true are those words? I will keep trying to do that.

p.s. if you are not a member of the church I belong to, you may not be familiar with one of the books of scriptures referenced above.  I belong to The Church of Jesus Christ of Latter-Day Saints, or aka Mormons.  In addition to the Holy Bible, we have the Book of Mormon, which is where the book of Mosiah (referenced above) is found. Please click here to find out what the Book of Mormon is.  I would love to go into detail, but I feel lucky to find time even to post this tonight!

Update

I can't bare to post a sad picture right now. So here is a yummy ice cream picture from one month ago.

I have greatly neglected this blog, as I have been posting on Facebook more recently. Blame it on the purchase of our iPad, where blogspot runs incredibly slow and where Facebook is fast!

We finished Case's fifth and final round of high-risk protocol chemo two weeks ago. Last week we went back into the hospital for another fever, this one to the tune of 104.1 degrees in the middle of the night.  That crazy Basillus Cerious bacteria was back. It had gone dormant in his port line and then decided to rear its ugly head again.  So his new double lumen port he got placed in NYC was removed last week.  

The doctors wanted to give his body a week to clear the bacteria before they placed a new line. So he had an IV in his little foot for two days and was stuck like a pincushion.  Seriously, it was awful. Then he got a PICC line placed in his upper arm, which he still has. We don't like it as parents, and neither does Case.  And apparently one of the lines isn't working now. Don't know what's wrong. So 

we are working on having a double lumen Broviac placed tomorrow. That means surgery again.

But that's the least of it. I was planning on posting all about our San Francisco trip, which was supposed to commence Saturday.  Notice the past-tense used of "supposed to"?  Case had a CT scan on Monday which, to our horror, showed considerable tumor growth.  It also showed a slight effusion (fluid settling) around both lungs...remember the horrible chest tube escapade?  His platelets are also incredibly low and can't recover, despite donor infusions.

So all of that combined means no MIBG treatment in San Francisco.  We are devastated.  Apparently the treatment just isn't effective against such rapidly growing disease, as it needs to be stable - or not growing.  The doctors also aren't willing to do the therapy if the effusion increases and he needs a chest tube.  He would be draining radioactive fluid...not good.

So we are gathering information and trying to make a new plan. Right now we are planning on doing a chemo combination he hasn't seen before: irinotecan and temodor. This has worked before in kids like Case to put them back into a stable condition. It would never be the cure. That's what we were hoping for with MIBG therapy.

On top of all of that, Case is miserable! We are all thinking he has a stomach bug right now. He has really painful retching and can't eat for the past two days. Poor baby. All in all, we are all a nervous wreck on behalf of Case and his comfort level. We have no idea what is going to happen.  

Prayers on behalf of Case's comfort, our peace of mind, and for inspiration for the doctors would be much appreciated.  Thank you!