Hiya FBF! As you can see we have had an amazing weekend, again.. Lots of love, laughter and FUN for all. Our tomorrow will be going to visit anthony bright and early. Home for so family fun and packing the Tahoe for yet another 5 day inpatient hospital stay of the 96 hr IL-2 infusion (putting immune system in overdrive). The IL-2 rounds are supposed to be our walk in the park, easy rounds.. But as we know the last time she had IL-2 she was very sick. Prayer request for less tummy pain and more BOREDOM would be greatly appreciated.. If we make it through this round peacefully, we will hopefully be discharged on Friday and have a little fun before we put her back in the PICU, Sunday evening for the combo round 4 of ch14.18 (pain) and double dose of IL-2 (high dose IL-2).. We KNOW the past combo round we were NOT able to complete but 2 days, because of complication of very High fevers and misery, complicated by c-diff.. I guess everyone is wondering why we have to keep on treating her if she is technically NED. The answer is simple. NEUROBLASTOMA is a very aggressive cancer, very tricky and hard to cure.. Although there is no tumors in her little body and her bone marrow is CLEAR now, doesnt mean that the NB Cells arent waiting and hiding in her little beat up body.. So, now we are combining immune system booster, with medicine that binds to NB CELLS, and sends her high alerted immune system into HUNT And DESTROY mode.. End of treatment is in site, hopefully done by early October.. If we were to STOP treatment now, statics show the about 70 children out of 100 WILL RELAPSE, and there is really NO cure if she relapses.. Certainly there are trials, starting chemo all over again, MIBG THERAPY, and different TRIALS we could try. But having to put a child that has been beat up by the wear and tear of 14 months of treatment is heart breaking to us. I feel sure that her little 24 lbs frame would NOT SURVIVE what we WOULD have to do to her.. So, what it boils down to, treatment has to be COMPLETEMENT.. Thank you all for following our journey/ sharing you love for our RAY of SUNSHINE.. GOD certainly need what he was doing when he joinrd these two hearts.. 💋☀️👍
Posted on: Sun, 13 Jul 2014 01:39:15 +0000
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