The picture was taken last week, but I love it!! One of the reasons Christi wanted a Siamese cat was she read they are able to be trained to walk on a leash. Well, everytime she's attempted it Buckeye runs around and Christi chases after it holding the leash. (One of them is being trained at least, hee hee!) This morning I signed Christi up for 4H. She's wanted to take her cat to the fair for as long as I can remember. Last year we told her, "Next summer." Well, each time we drive to the hospital we drive past the fairgrounds and each time she says, "I still get to take my cat to the fair, right?" We don't know much about it yet, but we think she will make a poster and then answer questions from a judge. She won't have to leave her cat at the fair and she's not certain if she will enter Buttercup or Buckeye. She proudly signed the 4H application form, hugged me and said, "Thank you, Mom."
While the girls are happily playing with their Littlest Pet Shop animals and before I misplace my notes from my Friday morning with Dr. Maris, I’ll post them here. Dr. Maris:
Any pain, lumps or bumps?Mom:
No lumps or bumps, started complaining of ankle and leg pain Tuesday night. Could it be from the Neulasta instead of the disease?Maris:
We don’t know enough about Neulasta in pediatrics so it is possible. If she were on the GCSF shots instead we know when the white count rises rapidly leg pain exists. Did she have leg pain before?Mom:
Yes, but I do not recall when it happened – if it were in relation to when her counts were coming back or not. I do remember we were in Philly when she complained. Maris:
We hope that the TVD had a good effect in further reducing her disease. We know that it made her terribly ill. We’ve put a lot of reliance on the topotecan using it with every round and hopefully it remains an active agent and we can use it down the road if need be. There has been concern that the lower dosage of it didn’t keep her disease down as the LDH went up with it. It’s now time to mix things up a bit and give her something harsh she hasn’t had before, something completely different.Mom:
I was thinking you’d suggest the low dose topo/cytox combo and we’d like to do that in our own home so that I can work and she can go to school. Maris:
That may be most convenient for you, but it’s not in Christi’s best interest. It’s most likely not powerful enough. Her LDH is above normal. Get her here Wednesday morning. If her platelets are high enough, she’s start Carbo/Etoposide. It’s three days outpatient. If not, she’ll go inpatient for five days of cytox/VP-16. Mom:
Isn’t carboplatin the chemo known to cause hearing loss? Maris:
What about BSO-Mel? Shayne and I would prefer that to Carbo.Maris:
We’re not excited about it. It’s just a different way to give the family of drugs. Mom:
Didn’t she have high dose cytox and VP 16 at Sloan Kettering and it didn’t work?Maris:
I don’t have her chart in front of me right now, but I’m hopeful that her platelets will have recovered enough by Wednesday to start the carbo. The carbo is very hard on platelets so she needs to have enough support to start the infusion. Maris:
I know you are concerned about the liver. We did the CT scan just to check for a fungal infection, not to check on disease status. The good thing is the scan was not any worse, maybe subtly better. Mom:
It seems to me that the liver responds differently than the rest of the body and while the rest of the body may respond, typically the liver does not.Maris:
What you say has a lot of merit. The disease can be resistant in the liver; however, there are cases when the liver does in fact respond, but it isn’t clear on a CT scan. You need to do a MIBG and trust that. Abnormalities on a CT don’t always go away. Unfortunately, some doctors don’t even know that and they’ll actually biopsy the liver and then learn the disease is dead. The liver doesn’t heal like other tissues, maybe its dying already. The CT wasn’t any worse. Christi needs to do something different for what will hopefully be her last harsh round of chemo and then once she recovers we’ll do a full evaluation of her disease status and see if we can hopefully get her on a clinical trial with minimal disease again. She’s had a lot of chemo and years of treatment; however, she’s never been through transplant so that is definitely in her corner. Maris:
Keep me posted on any leg pain or ankle pain and if it continues or worsens over the weekend, get her here immediately. I will come over and see you on Monday if you bring her in.
So basically that was it. Next I called Shayne crying with disappointment and then I went and booked our one way airline tickets. This morning I received a great scripture message from a dear friend. "I know the plans I have for you," declares the Lord. "Plans to prosper you and not harm you, plans to give you hope and a future" Jeremiah 29:11 I thought this was most fitting! Thanks, Lori!!
My sweet cousin Tricia will entertain Christi so that she doesn’t have to go to class with me Tuesday night. We’ll head for the airport at 4:00 AM with Uncle Jeff on Wednesday morning. At the same time my dear sister, Tina (Christi’s namesake) and her daughter (Cousin Shelby) will be leaving Cincinnati making the long (11 hours I estimate) drive to Philadelphia. (Thank God Shelby is on Spring Break this week! Christi will have a ball – well as much fun as you can have while getting chemo) with Shelby in town!! They’ll be with us throughout Christi’s treatments. If all goes well, they’ll drive us back home on Saturday or Sunday, which will save us hundreds of dollars in air travel, and get us both back to school next Monday morning.
Additionally, I’ve now come to terms with the fact that I’d rather have a deaf daughter than no daughter, so the chemo combo of etoposide/carboplatin is my first hope. Which ever cocktail of chemo is given to her, it’s going to make her terribly sick and land her for a long inpatient hospital stay again in about a week. Also, I know there is a chance she may not recover and this could be her final round of chemo; yet, I must trust the miracle worker, Dr. Maris who has gotten Christi so far despite all odds. I’m very grateful that we found the neuroblastoma listserv in the fall of 2002 and sweet families urged us to get her to Sloan Kettering where Dr. Kushner nine months later referred us to CHOP. Even though it embarasses Christi to pieces I always respond, "Only the best for Christi Thomas," when nurses at CHOP first learn we travel from Ohio to receive their incredible care. I thank the dear Lord for his guidance and wisdom and pray that it will continue.
We have been richly blessed!