[KHK] goto my blog for the latest on where we stand. Thanks.
Well… It’s hard to believe that we’ve been in BMT for some 50 days or so. And we’ve been home just shy of three weeks. These three weeks have been a bliss. Hospital stays are draining to say the least. But right now, Maya is well. Matter of fact, you can almost see her former self; Full of life and spunk and yes, even vinegar. Maya is also putting on some weight, albeit it is through NG tube feeds. But, she is Maya and we love her so much for who she is. You can’t instill “spunk”.
Life outside the confines of Sick-kids have their own unique properties. Yes, it is a lot less stressful. It brings our stress level down. And that’s when your body catches up to you. The sickness that you could hardly afford blooms when you’re not admitted. The “I can’t believe our daughter can be so sick” catches up too. And what must we do, now that we have a moment to breath? These are the primary issues that we deal with. Then, there are clinic days to contend with, the naturopathic doctors to see in the midst of trying to keep Maya entertained as well as trying to make dinners and keep the house clean etc.
The past two weeks or so have been additionally stressful. We started our journey not on our own. We’ve met fabulous people, parents and children who are stricken with neuroblastoma. And in the past 8 months, we’ve become close to four families; Connor Fox,Reece Hudson, Jake Schaeffer and Nate Hudson. These four children and Maya are all neuroblastoma kids with parents who share each others victories as well as set backs. Reece is NED (No Evidence of Disease) We can’t be happier for little Reece. She got away!!! It reminds me of “The Great Escape” or the “One flew over the Cuckoo’s Nest”. Yes!!! She did it!!!.
However, there were some setbacks as well. Connor is not doing so well. Jake did not respond to chemotherapy and subsequently, Jake’s parents have decided to take Jake to Boston for MIBG-131 treatment. Sick-kids is over a year away from getting MIBG-131 treatment center set up. Nate, who was just about done with immunotherapy treatment, suffered a relapse and had a brain tumor resection just this past Friday. Please say a little prayer for these children. They deserve to be well and live free of this horrible disease.
These events were occurring in our surroundings as we were also dealing with a dilemma. Namely, it didn’t look like we were able to qualify for immunotherapy because of VOD. (Veno Occlusive Disease). Part of the prerequisite for immunotherapy is radiation therapy minimally on the primary tumor site. The criteria for immunotherapy include:
- good organ function, including heart, liver and the kidneys (or kidney)
- Radiation therapy.
- No relapse or progression of disease.
The studies have shown that radiation therapy do help, despite the fact that there is a small chance of secondary cancer developing some time later. Now, because Maya suffered VOD, the radiation oncologists did not feel too comfortable radiating Maya, as radiation have also show to cause VOD. If you recall, VOD under severe case is pretty much fatal (96% fatality for severe case of VOD). If Maya’s VOD returns, Maya will not qualify for immunotherapy. But if we don’t do radiation, we do not qualify. If we get the radiation and there is a complication, we do not qualify. Damned if you do and Damned if you don’t. More over, Maya still has significant amount of disease left over. And for children like Maya, immunotherapy does not work so well. Recall that ANBL 0532 consists of three sections:
- Induction. (Try to reduce the disease as much as possible)
- BMT. (Through high dose chemo, try to get rid of the remaining disease)
- Immunotherapy. (address the relapse by getting your body to recognize NB as a foreign body and get rid of microscopic tumors)
Immunotherapy is not really there to “mop up” significant amount of disease. So then, what can we do? We are now consulting with Sloan Kettering hospital in NYC. On an initial consultation Dr Modak had the following statements :
- The fact that Maya has significant disease is a concern.
- Need to get her to NED.
- May be necessary to do additional chemotherapy using other chemos.
- MIBG may be an alternate solution.
Dr Modak had not yet seen the scans and so, he will have more definitive statements in the next few days .
“Luckily”, the radiation team feels that Maya will receive no more radiation to the liver than what the COG (Children Oncology Group) guideline dictates. However, they have no experience dealing with radiating a patient with VOD. “Luckily”, they are willing to proceed with radiation if we are able to accept the fact that they have no data to support the radiation. In other words, they are willing to “wing it”, if we can accept that we’re going in to an uncharted territory. What do you do now?
Mean while, we are running out of time. We are now at T+68. Radiation therapy as well as the scans must be done before T+100. If we agree, Maya will receive 12 radiation treatments to her primary tumor site. We also need a week to get the tests done prior to immunotherapy registration. So, next few weeks will be very busy.
We have also started a new regiment with the Naturopathic Doctor. Dr. Weidenfeld was kind enough to put us on an aggressive treatment that has shown progress. (I will detail it on my blog in the next few days)
Indira and I are in the midst of discussing our options. If we can at all get treatment in US, we will do it. We have even talked about picking up and moving to US, if we can make things work. We are not certain what options are available to us. But, we are looking.
What is clear right now, at least to me, is that we are running out of options here at sick-kids. Even if we can finish the protocol, it does not mean Maya will be free of cancer. Our battle is not coming to an end. We will need to find something to help Maya become NED. We wish for a normal and healthy little girl.
Please continue your prayers and chants for little Maya. And also please, say a little prayer for these lovely children, Connor, Jake, Nate and Reece. We need them all in our lives…
Note: Please, please have Connor Fox on you prayers/Chants/good thoughts on Tuesday, November 30th at 8pm. IG.