Monday, August 31, 2009

Cash updates...

Miracles are afoot, and you couldn't pick a better family for them to be granted to. Stacie and I used to work together, and in January of 2005, she, I, and our other friend, Janna, "decided" that we'd all get pregnant and be pregnant buddies, and our kids could all grow up together. Haha. In January of 2008, Janna and I found out that we were indeed pregnant about a week apart. Stacie found out that she was pregnant six weeks later. Janna's daughter and my daughter were born five days apart, on September 10 and September 15th, and Stacie's son, Cash, was born on November 1st.

Copied and pasted from Stacie's Caring Bridge journal, because I'm lazy. And stupid. If someone would tell me how to make the link all pretty, I'd appreciate it.

Thursday, August 27, 2009 2:01 PM, CDT

We took a pretty big hit yesterday. The tumor has spread to Cash's brain. UGH! We were immediately admitted back into the hospital and we have met with the neurosurgeons and another oncology doctor. Cash will have surgery Friday sometime to place a shunt in his head to release the fluid that is building up so we can start chemotherapy on Saturday. They think that the tumor is his brain started the same time as the tumor in the kidney, which happens in 30% of cases like this. With this piece of information, we may be changing our chemotherapy plan. There has been a study out of Dana Blanchard that shows that there is a more successful use of chemotherapy drugs that has a higher success rate than the one we were going to use. However, the doctors have to see if it can be used on children with both kidney and brain tumors. So believe it or not this is good news!
So now for the big reveal. Cash's cancer has a name, it is big, and ugly and we haven't shared it with anyone because we were trying to protect everyone. Cash has Rhabdoid tumors. Google it if you want, but I wouldn't suggest it. It's not pretty. If you read too much in to it, it will really get you down, so I would suggest just not looking it up. Rhabdoid's are really bad players, and don't play by the rules, and do their own thing. YUCK!
I sent Jason home last night to be with Haylie, she is really needing to be home and have some kind of schedule. Her and Jason will be back here on Friday for Cash's surgery and then my parents and sister will be here on Friday and stay the weekend. So, that is what I know today, remember to keep praying! - Stacie

Thursday, August 27, 2009 6:58 PM, CDT

It really amazes me how at home I feel here. No parent should ever feel at home on an oncology floor, but there is a comfort here. All the parents have the same look on their face and as you pass each other in the hall you just smile and nod at each other. Because you share a pain. You may have different paths but your children are on the same journey.
I did do a little bit of studying on the new treatment that is taking place at Harvard we are hoping to use here at Children's and it is giving us some hope. The outcomes are more favorable, although this is a tough cancer to fight. One of our oncologists is seeing if we can do this treatment plan since Cash has both Rhabdoid of the kidney and Rhabdoid of the brain. I even asked her if we still had to classify it as Rhabdoid of the kidney, since they took all the tumor out and she said yes. Grrr. But we are now the Rhabdoid Raiders! We hate Rhabdoid's and we want them gone. The attending neurologist also sounded very positive today when we were discussing the tumor in the brain and she said it is operable! SCORE! We just have to try to shrink it with chemo first and then try to remove it later if the chemo doesnt' make it all vanish (which would be awesome of course) She also stated it is much easier for her to remove little tumors than big tumors and that's what she wants to do. I started asking her questions about the cancer and she looked and me and said I don't know anything about cancer, I just know how to take the tumors out. So, I guess in a neurosurgeon, that's what you want to hear. Everyone I have talked to here says she is very aggressive and is a perfectionist. Good, I don't want someone operating on my son's brain that isn't a perfectionist. This is in by no means a cure. It is a treatment to achieve remission. As our oncologist put it "success is the only option" Rock on sister!
I have a feeling I am making an impression on the residents around here, and maybe not in the good way. They have started recognizing me in the hall. I have told them that I expect 110% of them and will accept nothing less. At least they know where I stand. I mean, I can't tell them how to do their job and I would never do that, but they need to know what I expect of them. Or maybe it is just that my son is so amazingly handsome they remember me because of him, which is Ok too :)
Cash's surgery is scheduled for 9:45 tomorrow and we get to come back to the 10th floor and then we start Chemo on Saturday. So the battle begins! Keep praying - Stacie

Friday, August 28, 2009 7:47 PM, CDT

OK, so AWESOME day today! The shunt placement went great, Cash is such a trooper. And then, our doctors came up with a treatment plan specific for Cash. They are combining the study from Harvard and the Regimin I and tweaking it just for Cash. So his chances for survival went from under 20% to over 50%! Praise God! Cash is already acting so much better since the placement of the shunt and it is relieving some of the pressure on his brain. We begin chemotherapy tomorrow and will do that for 4 days inpatient and then we go home and do one day of outpatient. Every 21 days we check back in to the hospital for 4 days of treatment. So now instead of 6months of chemo, we have 1 year of treatment. In six weeks we will come back to remove the tumor in the brain, and then we will begin radiation therapy of his abdomen and we will do the proton therapy of his brain. So we have a long road ahead of us but we have a map and a plan. Today was a victory! With this new treatment plan, Cash will be the first child treated at OU with this specific treatment of Rhabdoid of the kidney and brain. Go Rhabdoid Raiders!!!
So tonight, I'm leaving Jason in charge of Cash at the hospital so Haylie and I can spend the night at the hotel with Grandpa and Grandma and she gets to swim in the swimming pool! Big fun for the 5 year old!
Then tomorrow I will come back and keep up the cheerleading for the next 4 days.
So thank you to all of our crusaders, you all are awesome and we appreciate all of your prayers! Keep up the good work, and remember - keep praying! - Stacie

Monday, August 31, 2009 4:20 PM, CDT

We went to MRI at 12:00 and got back to our room at 3:00. This really isn't unusual since they went ahead and did another MRI of the brain, just to see the tumor in comparison to Wednesday. Nobody has said anything yet and normally if its bad they tell you the doctor is on the way over! It may be different since we are actually in the hospital now, but they said the doc knows we are back. In most cases like this if you don't hear anything for a long time, that's good. Cash missed his noon dose of Zofran so he had a little upset stomach and didn't really feel like eating, so once he got his meds we let them kick in and a slugged down 2 ounces like it was nothing! I will wait about another 15 minutes then offer him 2 more. He's pretty happy with his binky right now and he has started growling at the nurses when they come in to check his vitals. It's really funny. He has built up quite a fan base around here. We've had a couple of people come in saying they had heard all about "the cute baby on stem cell" which is the unit we are assigned to. Not that we are stem cell recipients, its just where they had a room available.
I heard an interesting story today about our oncologist. She is a very compassionate and positive physician. She was talking to one of her 11 year old patients one time about losing her hair and she told the girl that its hard and the girl said "how would you know?" So doc when home and shaved her head! She kept it that way for 3 months just so she would know what her patients have to go through. Wow!
I finally got Cash's clothes ordered. One says "If I have one more MRI, I'm going to stick to the refrigerator" and the other one says "If I have any more chemo, I'm going to glow in the dark". I'm hoping they will be delivered in time for me to get them washed so we can wear the chemo one to clinic on Friday. This baby has already had more surgeries, more MRI's, more CT scans and more ultrasounds than most adults. And we're just getting started!
Cash had a really good night last night, and I'm hoping for a repeat tonight. We will have to get prescriptions filled when we leave on Wednesday I have to give him injections every day to help his white count. Starting next week we go twice a week to get his levels checked and have to keep a real close eye on his platelet count because of the special combination of chemo drugs he is taking.
May try to get out of our room tonight and go to the play area here in stem cell. They have an infant toy similiar to one Cash has at home. I'm hoping he will tolerate it well enough to play. It's hard for me to take him on a walk by myself trying to hold on to him and "drive" an IV pole. I may just drag the toy in here since everyone else on the unit is too big for it. We'll see how the night goes.
keep praying ! - Stacie

Thursday, August 20, 2009

I feel helpless

My friend Stacie's son, Cash, does not have a Wilms Tumor, as they had hoped. It's something else - rare, and aggressive. They go next Tuesday for the first round of chemo and an MRI so that they can make sure it hasn't already spread to his brain.

I find myself wishing that God was like my Congressman and I could start a campaign to flood Him with letters, emails, and phone calls and MAKE Him do what I want. But God is BETTER than my Congressman. He is wiser, and has a Perfect Plan. I'm still praying with everything that I have.

Friday, August 14, 2009


In case one doesn't know (and as we approach Callie's first birthday, this is coming up waaaaay more than it should) breastmilk continues to be a great source of nutrition, even after the breastfeedee turns one year old.
Even if she has teeth.

I read it on the internets, so it must be true, but if a person still doesn't believe me, I can get a note from our pediatrician.


The tumor is OUT.

Specific prayer request:
Favorable Histology report.

Thursday, August 13, 2009

Pray with me...

My friend, Stacie's son, Cash, is going into surgery tomorrow at OU Children's. They spent last weekend in the hospital here because he was severely anemic, dehydrated, and his white blood cell count was low. Now, they know why. He has a tumer on his kidney that they are going to remove tomorrow, and spots on his lungs. They have scheduled radiation and chemo for next week.

Cash is 6 1/2 weeks younger than Callie, and Stacie and I thought it was so neat that, after not getting pregnant together for so long, God gave us babies so close together. Our other friend had a daughter 5 days after Callie. We'd make jokes about Cash going to his Prom with Callie on one arm and Andee on the other. :)

Her daughter, Haylie, prayed every night that I was pregnant for "Wes and Jessica's baby to grow big and strong so that she can come play with me in September."

She has specific prayer requests:
  1. A good histography
  2. an aggressive surgeon
  3. that God will guide the surgeon's hands and give him wisdom and clarity

Wednesday, August 12, 2009

And what have we been doing lately (besides neglecting you)?

...Teething. And catching Mama's cold. Which led to a double ear infection, complete with scary high fevers. Which means:
Other than that, though...
We've done a little light reading...
...learned to climb...
...make the truck go across the floor... snacks in our chair...
... and hijack our very own remote!

Eleven Months!!!

See them? Can you see the teeth?
Our big girl is 19.7 lbs (courtesy of a Pediatrician visit yesterday, see the post above)
She is full on walking/running and has two bottom teeth in for real and two top teeth just below (above?!?) the surface. She can match shoes, point out Mama and Daddy, and wave bye bye.
We're still not sleeping through the night (which is the first thing anyone asks) with any consistancy and she's still not talking, but we're working on several consenants and love love love to say Dadadadadadadadada. If Daddy's around, he smiles real big and responds with Baybaybaybaybie.
She loves shoes, maryjanes in particular, and will bring you a pair to put on her.
Then, she'll prance around the house in her maryjanes and diaper.
She can get very resourceful when there are no teething rings handy.