Thursday, July 26, 2012

A little ray of sunshine

I am not sure exactly why posting is such a struggle lately, but an update is way overdue. And we finally have some good news to share!

Stem cell collection went really good! We were expecting to collect for about 3 days, maybe 4. But we got everything in ONE day! Not only that, but he collected an incredible amount. One of my very first friends that I made at Jasper High School when I moved to Texas when I was 14, Lauren Coutu, happens to be working at Carter BloodCare. This is the lab that collects, processes, and freezes is stem cells. Awesome! So Lauren was in charge of processing and freezing. She said that her boss has never seen so many stem cells in the periphery (stem cells pushed outside of bone marrow into the blood) before in a child or adult!

For one transplant, you need 5 million stem cells. We wanted enough saved up for 2-3 transplants. Um, Case collected 120 million in one 3-hour session. So we have 5 bags of 6 million stem cells and 12 bags of 12 million stem cells. In essence, Case could have almost 30 transplants... Not that that is humanly possible. But "Go Case!" We loved that little ray of good news.

Saturday night we were transferred from Children's Dallas to our usual location in Plano much closer to home. It is so much nicer to be 10 minutes from home, to have more visitors, and to not have residents milling around mucking things up.

On Monday we had a CT scan, which has been a horribly dreaded event for us, as most of them lately have shown growth. But, we got another ray of sunshine when this scan showed shrinkage in the tumors. HIP HIP HOORAY! Chemo IS working! So we started our 3rd round and are almost done. We will do two more cycles, then move on to radiation and a litany of other treatments. So we are very far from any safe place and we don't feel like we can confidently say "he's going to make it," but we sure do feel ecstatic about some good news! Now we just need to take care of every single microscopic piece.

On the chest tube front, not so much good news. This morning Xavier woke up here at the hospital to find the chest tube lying on the bed next to Case outside his body! He must have pulled it out over night, but never cried or made a fuss. Unfortunately since no one knew about it and couldn't address the issue immediately, part of his lung space filled up with air, and it was increasing as time went on. It was pushing his right lung into his heart...not a good thing!

So right back up to ICU we went for placement of a THIRD chest tube! This time I stood beside the bed holding Case's hand through the whole thing. I guess you can say we have both toughened up through the last few months. I cant believe I was able to watch all of that, scalpel and all. Let me just say he needs A LOT of sedation seven go "under." He is such a tough cookie.

We are so incredibly sick of this effusion in his chest and the resulting chest tube (understatement of the century)! The doctors don't have a solution for the leakage either. He is fasting right now indefinitely in the hopes of drying out the leak. He is allowed to drink water and snack on pretzels, so needless to say he is losing weight right now! So please please pray that the effusion will heal and that the chest tube can be permanently removed, allowing us to go home some of the time.

All of these pictures are starting to look alike. Thumb in mouth, laying in bed, favorite blankie pulled up under his chin, watching TV. It's alright, I am not going to ask anything else of him!

So pray, pray, pray. Prayers of thanksgiving and for effectiveness of chemo, and for no more chest effusion!

Thursday, July 19, 2012

Stem cell collection

So even though Case has cancer in his bone marrow, he still has "rock star bone marrow!" His blood counts have recovered at lightning speed, like they usually do. So the doctors had to hurry and slip him in for surgery last minute to put in place the tubing that will pump his blood out so that the stem cells can be collected. Once they are separated, his blood will be pumped back into him.

It's nice to have that happen ahead of schedule. We start tomorrow. Then we will wait for a CT scan next week to see if we have any shrinkage in the tumors. If all we see is growth, then we wont do chemo because there is no point in pumping him full of poisons that aren't working. If there is some positive progress, then he will get some crazy, super dooper high doses of chemo that will destroy his bone marrow, hence the need for his own stem cells to "rescue" himself.

He ate half a slice of pizza after surgery today. That was a nice treat to see, as he usually eats one pretzel stick a day. He was feisty too...and nice change from zombie mode.

Pray for good collection and for the chemo to be working! The red and blue tubes are the catheter. The other tube under the gauze is his blasted chest tube.

Tuesday, July 17, 2012

Here you have it...

I find it depressing to post here these days. Last week Case went home for two nights and one full day. Then we were transported by ambulance to Children's in Dallas to have another chest tube put in. His leaking lymph system (no better way to put it) just won't heal.

On Thursday or Friday he will have a catheter (a huge central line coming out of the skin) placed on his right chest side in preparation for stem cell collection. He will be hooked up to a machine that takes his blood out, separates the stem cells, then puts the blood back in.

After several days of that, he will be done and he will start another round of chemo. Only this time the chemo is so strong it will destroy his bone marrow... Hence the need for his own stem cell transplant as a way for his body to grow his bone marrow back. It all seems very counterintuitive to give his body back his own cancer-diseased bone marrow, but that's the way it's done. "usually" the cancer doesn't regenerate in the marrow... Um, sure hope not.

It's all very depressing, seeing as how the truth of the situation leaves us inpatient for weeks and weeks to come. I miss Graydon and my house, and my husband! A family of four, what's that? I miss the old Case that babbled and wanted to play or walk. He is so lethargic and literally lays in bed all day long, not needing or wanting interaction.

We have a long, long road ahead of us. There you have it.

Friday, July 6, 2012

Cancer Sucks

I have had some people say that they thought everything was great from my lack of posts. On the contrary, we are still in the hospital! We are day 3 into round 2 of chemo (total of 5 days). We are rounding out our fourth straight week here.

I would like to say that I have survived with grace and poise, but instead I have been filled with severe impatience, anger, bitterness, and resentment. Case, the poor little dude, has endured so much, I can't even begin to describe. I will say, though, that the hospital is made ten times worse all because of adhesives and tapes that are placed all over his body, only to be ripped off once they need to be removed.

He is chest-tube-free, but not because the doctors were okay with taking it out. Yesterday he ripped it out by using his feet! A nurse and doctor were changing the dressings on some bone marrow biopsies and we think his little toes wrapped around the tube and yanked it out! Despite the horrid pain and chaos that ensued, within 30 minutes he was already a new kid...for the better!

He has had several scans, whose results have not been too rosy. These tumors have proved to grow with a vengeance and aren't shrinking as easily as they did the first go around (hence the bitterness, anger, etc).

We are sick of splitting our time up between our two boys. We are sick of Case being so sad and continually being put through so many painful things. We are sick of bad news, and sick of hospital food! We hate cancer, and everything associated with it!

Our floor here at the hospital is shared with general surgery kids (tonsillectomies, broken bones, other non-sick surgeries). So I will also tell you that we are so sick of hearing these "sick" kids wailing because their leg hurts, only to be released the next day, and return to soccer practice the day after that. I can always tell if a patient is an oncology patient or not. Our oncology kids learn that it's not worth crying over every pain, ache, and prick.

The vague idea is that he could possibly go home next week after chemo is done and if we don't have any other things come up, which inevitably will. We keep praying for good results and that Case defies the odds and beats this nasty thing! Sorry for the downer of a post, but it's reality! Keep up with the prayers.