In February 2014 my grandson at the age of 10 weeks was dx with NEUROBLASTOMA Stage 4S. (S) simply due to his age of less than 12 months. Devasted by this news we immediately met with the Peds Onc. Team.
It was determined that due to the significant metastasis he would undergo surgery. The surgical team for Neurablastoma was top notch. The surgeon was able to remove the tumor and performed a liver wedge resect. Post surgery team, nurses and staff were the best.
The next two weeks were a living nightmare. Awaiting the final pathology, biology and smears seemed like a year went by. We finally receive the call from Dr Gail Megason, per the pathologist surgery was a success, it was indeed NEUROBLASTOMA Stage 4S and no other tmt would be necessary. The diseased liver would heal itself (almost like having a scab on your hand once the scab healed the sore would be gone).
Two weeks to the day my grandson began to show signs of pain and distress again. He was taken to BEB scanned and it was determined that his disease was back with a vengeance. We met with the oncology team again and chemotherapy would be initiated immediately.
Within hours a chemo port was placed and chemo began. In all this there are several factors that come into play in the tmt, care and comfort of treatment. Scans, tumor markers, BM bx and bone scans. We we're enlighten to find out that his original Bone scan and BM bx were in fact noted to be diseased with his original scan. We only told this news after he completed his first round of chemo.
After chemo your WBC is compromised so you are given Neup inj to help elevate the WBC and strengthen your immune system. All the literature given to us by Batson on the drugs administered and the injections post chemo indicate pain. My grandson is allergic to Tylenol w/codiene which is the drug of choice for this Oncology Floor. His Neup Inj causes pain with him. Immense pain. My daughter was told to give him Tylenol. SERIOUSLY!!!!! This is a baby with Stage 4 cancer, extensive liver mets along with Bone Mets and lymph node involvement and also a Bi-lateral tumor involvement to the adrenal gland. (R) adrenal gland removed with surgery.
His next chemo is an inpatient chemo which requires over night stay. He is in constant pain and "The OTC Tylenol" is not able to control the pain. Oxycodone is ordered every six hours and the OTC Tylenol for breakthrough pain. Mind you this RX is given to my daughter to control his pain as he has extensive disease.
He is d/c with the rx for Oxycodone for the pain and the pain we will have with the Neup Inj as this stimulates the BM which causes long bone pain. As described in the literature given to us BEB.
Here we are at his 5th round of inpatient chemo and they do not want to administer the Oxycodone but the Tylenol w/codiene which he is allergic to. Their response is "this is just not what we give". We don't have cancer patients complain of pain, are you kidding me????? Of course he is unable to communicate his pain because he is 5 mths old now. So he screams from 330 in the afternoon until 930 pm when THEY decide to get him something for pain.
To say we are very upset at this point is an understatement. First it was never fully disclosed to us the extent and metastasis of this terrible disease. Then we learn that the pathologist phoned the doctor back immediately and urged her to get him started on chemotherapy immediately. Dr Megason's response to us when questioned was, "I was waiting until he became systematic". There's no evidence to this but one would think if chemotherapy had been initiated immediately we may not be facing the metastatic disease that we have now.
This is only the beginning, after learning all this my daughter request a second opinion with St Jude Hospital. At this point Dr Megason becomes agitated that we even suggest a second opinion. The arrogance of this physician is beyond words. She (or so we are told) has decided that we (he) is not worthy of her time. We are told that she takes offense to someone requesting a second opinion on her watch.
My daughter and grandson have been shunned at this hospital. The chemo tmts continue but the courtesy, respect and care that we were showed in the beginning are GONE. Scanning and checking tumor markers are part of this tmt. Twice they have placed cotton balls in his diaper to collect urine (checking markers) and my friends twice those urine collections have been tossed in the trashed. They were not sent to the lab.
We have asked them to explain if he is unable yo take Tylenol w/codiene for pain what is the drug of choice if you do not wish to dispense Oxycodone? Their response is regular Tylenol. This simply is not acceptable. My understanding of care is administering the proper drugs to halt growth of the tumors, stabilize if possible with remission as our goal and also manage pain. I'm or are we wrong for wanting comfort for him? He cannot verbalize his pain he is now 7mths. read more