Wednesday, August 29, 2012

It's On!

Just a quick post...  Appointment went well today. We learned more about this scary treatment and will be back here on September 24 to begin treatment on the 26th. We will probably be in SF through October 3rd.

For 5 to 7 days Case will be considered highly radioactive and we cannot be around him. The first day each caregiver is given 15 minutes, which increases to 1 hour by the last day in the hospital. Following release from the hospital, for two weeks our contact with him is limited.  For example, I can hold him for five minutes but then need to put him down for the next two hours.  I am really struggling with that. But if this treatment could save him, I don't have a choice. This could be what saves him.

Tomorrow we fly home to Texas and will start our fifth round of chemo next week. Prayers are always needed!!

Friday, August 24, 2012

San Francisco or Bust

We received a wonderful surprise today in being able to go home after just one night in the hospital. Yippee! That usually doesn't happen for us! So we are home still connected to IVs for nutrition and antibiotics. We continue to switch between our roles as parents and nurses.

Now on to other things...

Eek! And Aak! And Ugh! And Seriously?! As of a few hours ago I will be flying out to San Francisco on Tuesday to take Case to a consultation appointment at UCSF for radiation therapy. We will have appointments on Wednesday and fly home Thursday.

Why does everything have to happen so last minute? There are no frequent flyer tickets available and Corporate Angel was already closed by the time I found out we were going. Thank goodness we have some funds from all of our awesome friends' fundraisers and generosity!

And also thank goodness that my mom and dad will come with me. They lived there for four years while my dad went to dental school, so they are my emotional support, chauffeur, travel agent, babysitter, and best of all, my mommy and daddy! Graydon will stay in Texas with Xavier.

The actual treatment would take place in about five to six weeks. We have one more chemo to do and recover from that will begin September 4th.  The treatment is called MIBG therapy. The technology is also used diagnostically with a scanner. Case has had several MIBG scans that show bright spots where there is live cancer in his body.

With treatment, a much higher dose of radioactive isotopes are injected into his body that targets the NB cells. He actually won't feel sick or get neutropenic like he does with chemo. The big problem = his whole body will be radioactive in and of itself. He has to stay in a lead-lined room with a catheter in bed for 3 to 7 days until he is no long radioactive. Which leads to another big problem = we are not allowed to spend more than ONE HOUR with him every 24 hours. So essentially he has to stay by a room...with IVs and a catheter...while he is radioactive. He is 20 months old.

So that leaves me as a big old ball of stress, which is a huge understatement. We wouldn't not do a treatment that could save his life just because it is hard. I am just scared and my heart already hurts for him for that isolation time. We apparently will have him mildly sedated during those days.

I feel like life just keeps getting harder and harder.  There is still so much to be thankful for, and I recognize that every day. It would just be easier for me to get through all of this crap if I knew he was going to make it in the end. It feels like the biggest slap in the face to think of going through all of this as a family and to lose him in the end anyway. I guess what I just wrote defines what faith is. A belief in things unknown. I have faith; now I just hope I have the courage to do everything I have to do.

Thursday, August 23, 2012

Big Toe Monster

Last Friday we went home and it was so great! "Was" is the key word. Back in the hospital today. All because of a stupid little mildly infected big toe.  That, combined with his ZERO neutrophil count means inpatient antibiotic treatment. I bawled, like a baby! Don't know how long we will be here. ...sigh...

Wednesday, August 15, 2012

FC Dallas Best Case Scenario Night

We have some amazing friends who are really showing their support for little Casers.  Jon Harris and Lindsey Ellington have organized a fundraiser through FC Dallas, our local professional soccer team.  By purchasing tickets for the September 15th game through the link below, a portion of the proceeds will benefit Case!  As an added bonus, that day is Xavier's birthday, so your support will also be a gift to him!

Click here for the link to purchase tickets for Best Case Scenario Night at FC Dallas

Click here for the link to information about Best Case Scenario Night!

Chik-fil-A Day for Case!

Click  here if you want information for the fundraiser that my friends have set up for Case.  It will be Saturday August 25th at the Chik-fil-A in the Willow Bend Mall in Plano. A portion of everything you purchase will benefit Case.

Thank you to Lisa Bird and Cody Northen for doing this for us! I loved Chik-fil-A even before this!

Round Four of Five

I believe an update is in order. We are currently in the hospital (surprised?), but this is planned. We started chemo last night, round 4 of 5 of the standard high risk protocol. If all goes well without any complications (could life be so good?) then we will go home Friday. That seems so amazingly short and wonderful!

We were supposed to start chemo Monday, but we felt like we needed a CT scan before proceeding because we had some cause for worry.  With neuroblastoma a hormone can be measured in the urine, so in essence the increase or decrease of cancer cells can be measured through the increase or decrease of this hormone in his urine. Without going into more medical detail, we will call them "urine catecholamines." 

We have been testing every week and the last two weeks showed an increase...which led to me freaking out! The hormone levels can sometimes be affected by eating bananas, chocolate, vanilla, and by some medication. Case does eat bananas in smoothies I make, and his IV nutrition and his blood pressure medication (because he is an old man) have both been known to raise these levels. But we wanted to make sure.

So into the scanner he went! And we got "good" results. I put that in quotation marks because we would have preferred better, but we will take it! One spot showed a significant decrease, while the rest remained the same size. I have to remind myself of two things:
1. Thank heavens they are not BIGGER!
2. This is a scan we did three weeks after the previous scan. No one in the oncology world scans that often or expects to really see a marked difference in shrinkage in such a short time.

So I am trying to remain calm and take deep breaths.  Trying, trying.

Last week on Thursday we went home...glorious home!  We had such a fantastic time at home. Graydon has really been feeling the stress and separation lately, so it was a necessary break.  We got a trampoline in the backyard and have loved it! Case has started eating and walking around a lot. Remember his super skinny thigh in the car seat picture two weeks ago? Well, I can't help but feel them all day because they are gaining some more chunk. Hooray!

He has continued to be on antibiotics for the crazy Basillus Cerious bug that he got. I know I shared on Facebook but not here, that if this bug goes untreated it acts like Anthrax or meningitis. Seriously? Will life ever be normal? Nope. 

So at home Case is hooked up to IVs for 18 hours a day: antibiotic, nutrition, and lipids. X and I feel like we should be given nursing licenses because we have to hook everything up. We need to video us doing it, because it takes at least 45 minutes each time and it is intense. It's worth being at home though.

As thing stand right now and if they continue to be good, we will have one more round of standard high risk chemo in three weeks, followed by some crazy chaotic chemo that will permanently destroy his bone marrow and WILL require a stem cell transplant. I am dreading that because of the length of the hospital stay (they say to plan on 6 weeks) and for the risk of infection, as well as the strict seclusion to keep germs out. Mentally that will be tough!

Then we will do some kind of radiation, which is nasty, and some follow-up therapy that is a little undefined right now. Either way, we are looking at AT LEAST ONE MORE YEAR OF TREATMENT, and that's the good scenario. Trying to take deep breaths!

Next week we will be meeting with Dr Granger again from Cook Children's in Ft Worth to talk about some drugs that are not yet approved, but are still in phase testing. Scary, but exciting at the same time, as these drugs target a bit more of what Case is dealing with.

And as I have said before, there you have it!

Sunday, August 5, 2012

Right back at the hospital!

I suppose we weren't too shocked when our time at home was short lived. Saturday morning Case woke up with a fever...something you cannot take lightly with a cancer patient.  X took him in to the ER (since it was Saturday and the clinic was closed) for some blood tests and some antiobiotics.

They got home around 4:00 pm.  As we were putting the boys to bed we got an urgent phone call from the hospital saying that one of the blood culture tests came back positive.  So X loaded him back up in the car and there they have been since!

We are still waiting for a specific culture test to show us exactly what kind of bug he has in him.  That information will let the doctors give him a very specific antibiotic that he can possibly take by IV at home.  For now he is taking a general antibiotic.

Our poor boys...Case for personally having to suffer through this experience, and Graydon for constantly having the family split up right before his eyes. 

Other than a fever (and I'm sure he feels terrible inside) Case has remained pretty happy.  There still is no more fluid or air accumulating in his chest or abdomen, and we are so so thankful for that wonderful blessing!!  I'll trade that problem for a fever and infection (not that we are okay with this, by any means).  I'm sure by the time Case is ready to come home it will be chemo time and we'll just move back in to the hospital. 

We are so sick of this!

Wednesday, August 1, 2012

Somebody pinch me

Are we really going home? Hooray! No more chest tube! Hopefully we can actually remain at home for the next ten days before next chemo