Charlotte is Home!

Charlotte is home. At the moment she's sleeping in our bed looking like the classic cherub out of a da Vinci painting.

That is the good news. For the most part, she seemed to tolerate this first round of chemo well. The last day, she was a little on the grumpy/fickle side and did not have much of an appetite. We came home with a whole set of prescriptions (that daddy forgot to fill last night-bad daddy!) to take and the next week will be filled with doctor's appointments, trying to get her in to therapy appointments again, etc.

Our news on the insurance front is not so good.

One problem: Humana only insures about 400 policyholders in the entire state of Virginia so while they have had a license in VA for a while, there is not a lot of insurance "history" to go on. In talking with someone from the State Commission on Insurance, he feels like we probably don't have a huge "leg" to stand on since insurance companies can arbitrarily (and legally) work these network/out of network stipulations into their policies. It would be a lot easier to fight if they were either 1) flat out denying us care for her problem or 2) if Duke did not/could not provide the chemotherapy treatments. Since neither is the case, we do not have much recourse. Fighting it with lawyers would probably not do much good either.

So we are faced with a decision: opt for in-network care at Duke for everything since it would be very difficult (if not impossible) to coordinate care between the two hospitals or stay at MCV and opt for out-of-network care for her transplant services and pay the out-of pocket costs ourselves. As we have calculated it (based on what Humana will and will not pay for out of pocket care), we would be looking towards AT LEAST $40-45K expenses just for transplant services. We have an additional out of network deductible ($8K) and then we pay 30% of the allowable cost up to $35K per year.

Roger and I have discussed, debated, and prayed over this issue in the last 24 hours and the more we think about it, the more we realize that:
1. The only reason why this has "worked" so far is because Roger and I are a team and we are handling this together (with our wonderful support system)
2. We need to BOTH stay close to Charlotte and to our "Romp n' Roll baby" (basically our second child) during this entire process or the plan just won't work.
3. We have faith that we will be able to raise the funds (somehow) to cover her out-of-network costs and it is worth staying close to home. We have also looked into some medicaid/SSI assistance options which may be helpful down the road.

We have probably one more possible route with the insurance company based on some of the documents I read over last night and I will contact the insurance commission on those on Monday but this is probably the direction in which we will head.

In the coming months, we will probably organize and/or ask others to organize some serious fundraisers to help with Charlotte's health care costs. I mean, with this network in place, we've already put about $7000 into CJ's account. Of course we can raise upwards of $50K for her. And then keep it going for others.

Many of you have been MORE than generous so far and we appreciate that. We want any fundraising we do to be creative, impactful, and meaningful to everyone. Please let us know if you have any ideas. Roger already has some tentative plans. His little mind is always churning out ideas.

Does anyone have experience in organizing non-profits and/or foundations?

p.s. Roger feels really bad about forgetting the prescriptions and he got his own as it was his "comfy shirt" that was used to catch what the anti-nausea medicine would have prevented. The other medicines weren't necessary until today.

p.s.s. CJ gets to see "her Devon" today! YAY!

Our Story (from the very beginning...)

Charlotte had been complaining of headaches for about 2 weeks. We decided to take her to the pediatrician and they immediately sent us to St. Mary's hospital for a CT Scan. The scan revealed a large (orange-to-grapefruit-sized) mass and Charlotte was admitted on 1/20/09 to MCV hospital in Richmond. She was diagnosed with a PNET tumor (Primitive Neuroectodermal Tumor) with its origin in the thalamus. PNETs are similar in structure (on the cellular level) to medullablastoma. Medullablastoma is the most common malignant brain tumor in children. On the other hand, PNETs are more rare and can sometimes behave differently. From what we understand from her doctors, her pathology revealed a very aggressive tumor that tends to regrow quickly without treatment.

She had 2 craniotomies in 2 weeks. Surgery was able to remove about 90% of the tumor and after a 3 week hospital stay, we came home for outpatient therapy. She emerged from the surgeries with some left side weakness but quickly regained the ability to walk and use her left hand with support.

Charlotte finished her first round of inpatient chemotherapy on March 13th and finished her second round on April 10th. We started a third round of induction chemotherapy on April 28th; however, a new MRI revealed that her tumor was growing in spite of the chemo.

At this point, we scrapped her current protocol and had a consultation with the clinic at MD Anderson in Houston, TX to get guidance on future treatment of her tumor.

Her third surgery occurred on May 27th and was very successful. Dr. Tye removed nearly all of the remaining tumor with just a few very small bits left over in places he wasn't comfortable going, including some on her brainstem.

Her new chemo protocol developed by the folks at MD Anderson began soon after her 3rd surgery. On July 11, 2009, two days after her fourth birthday, we packed up and headed back to Houston, TX for 30 days (7 weeks) of proton radiation therapy. She also received some chemotherapy during this time. Charlotte tolerated the radiation/chemo combo well and we returned from Texas on September 1, 2009.

Charlotte continued on a revised chemo protocol that included accutane, valproic acid, topotecan (all oral) and velcade (IV 2x/week every 2 weeks).

Charlotte's latest MRI (November 6, 2009) revealed that the tumor continues to grow despite radiation, chemo, and all other treatments. The tumor growth is once again placing pressure on the spinal fluid in her ventricles, causing enlargement of her brain cavity.

On November 8, 2009, Dr. Tye placed a shunt in her head. The shunt drains to her stomach and allows pressure to be relieved.

We are pretty much out of treatment options at this point and our time left with Charlotte is probably limited. We are going to enjoy whatever time we have left, including a trip to Disney World sponsored by the Make-A-Wish Foundation.

We are extremely grateful for the tangible, monetary, and spiritual support that Charlotte's community continues to provide in our time of crisis. In the near future, we will formally establish the CJ's Thumbs Up Foundation (CJSTUF) in her name as a mechanism to "pay it forward".