Well..the diagnosis is very frightening...Neuroblastoma---stage 4. Lisa has masses adjacent to spine in her stomach, lungs, pelvis and leg bone. There are some lymph node enlargements in her lungs. It is also in her bone marrow.The treatment for Neroblastoma is very aggressive and while it will most likely shrink the tumors, the drugs are very toxic and can cause other problems.
Neuroblastoma is a tough cancer to beat....only 20% become cancer free for life. Looks like most children might beat it for a while (clean for 2-3 years after initial treatment), but then it is back and many times they lose the battle the second time around.
Lisa is on a leave from the hospital for the weekend. So long as we keep her dosed on Tylenol, she is her normal happy self. It's hard to believe that all this stuff is happening in her little body. It's very upsetting to know that to help our daughter we basically have to poison her.
We will return to the hospital Sunday night so she can get her IV hooked up again. Monday will be a day of more tests to make sure kidneys are working optimally (probably will require some type of shunt because her one of the masses is compressing her kidney and it is not draining completely). She also will be getting a port put in for her to receive medicines, have blood drawn, etc.
We expect to start the chemo this week, possibly Tuesday. There will be at least 4 more chemo treatments scheduled every 21 days. Each chemo treatment will require 3-5 days of hospitalization. After the cycles of chemo is completed she will have a major chemo treatment with a bone marrow transplant (using her cells that have been collected throughout the process) which will require hospitalization for 3-6 weeks. After that there will be radiation treatment.
This looks to be lonnnnnnnnngggg, tiring, scary, sad, painful road. I pray for faith, strength, dignity and courage to help us through this. I pray that we can keep our eyes on today and our thoughts from tomorrow, because there are just too many unknowns.
4 comments:
We're here for you no matter what...
I find it inappropiate for you to leave information such as NB is tough to beat only 20% of the kids become free of it and it comes back and many lose there lives the second time around.
I am a MOTHER of a NB baby who was diagnosed in May with 4s and our chances are VERY good which I thank God for. Every case is different and for you to post that information on your blog can scare the hell out of other NB parent's who may come here looking for comfort and support. I have never heard or seen them numbers in my research which I have been doing through the american cancer society and through my doctors. You will be in my thoughts and prayers and you are in the BEST hands at the U of M.
The reality is that there are different stages and different prognosis for each. Children diagnosed with Neuroblastoma that are less than one year old and in stages 1, 2, or 4s have a more favorable prognosis - 70% survival. It is not inappropriate for this family to communicate the reality of their situation to others on thier own blog spot. Each child is an individual with thier own circumstances. In order to be supportive and to gain support, it is important that people don't personalize and compare other cases with a focus of disapprovement on how families choose to handle or communicate their situation. As a nurse and as a mother of 3, I commend all families who are dealing with pediatric cancers for your strength, courage and faith. My thoughts and prayers are with you.
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