This morning has been another barrage of emotion.
Ezra still hasn’t eaten since Friday, and has barely drank anything. When he does drink, he can only take a sip or two before coughing and not being able to take more in. He is on fluids so at least he’s hydrated, but these are bad signs. He hasn’t gone to the bathroom in over 12 hours, even though he’s had quite a lot of fluids being given – usually he’ll have a wet diaper every couple hours. His liver is still inflamed, and the drs say him not having any wet diapers is 99% caused by his kidney now slowly shutting down. His breathing is more rapid than last night – and last night it was very high. This is because his lung has fluid in it (at least the right lung we know for a fact), and the space under the lungs is also filling with fluids as the tumors are blocking areas the body would normally get rid of fluid. The tumor on his eye has grown downward to be under his cheek as well.
His platelets are not holding – he gets them and very shortly after they’re already gone. Because of this, they can’t do any operations, as the risk of bleeding is through the roof. He’s breathing so fast that eventually he will tire out and not be able to breathe that much, but we can’t intubate him (put a tube in his throat to breathe for him) because any nicks along his throat while intubated with his platelets not holding at all would mean he would bleed internally. This risk is extremely high. When Charley was intubated, that happened as well (but his platelets were fine so it wasn’t a huge issue).
We got results back on the MIBG scans from Thursday, and the Neuroblastoma has spread to nearly every area of his body. His arms, legs, chest, lungs, head, and neck are all showing large amount of activity – much more than he has ever had, and much quicker. Remember, we had MIBG scans the week before as well, and the growth since THOSE scans is quite a bit. We also got results back on his bone marrow biopsy from Monday morning, and his marrow is showing a large amount of cancer, much more than before. Because of the complex situation of everything shutting down in Ezra and the extremely rapid progression of the cancer, the drs don’t feel the chemo can be continued – his body can’t physically take it. We’d be poisoning him even faster than the cancer alone is.
What I’m trying to say is… Ezra is dying.
Neuroblastoma is a very aggressive cancer. It is relatively rare, but is the most common cancer in infants. Only 650 cases a year are seen in the US (compare that to nearly 200,000 annually for breast cancer and over 40,000 a year for leukemia). It is not well-funded or researched, although the past decade has seen a lot more focus on it. This won’t keep happening forever. Doctors and researchers learn from every child who gets this cancer, and the things learned in the past decade alone have been incredibly promising. We hope and pray for a cure or a more structured treatment regimen to be developed soon to have this not happen to other families and children. Not even counting our and your hurt and sense of unfairness – this isn’t fair to Ezra. This isn’t what a 2 year old should be doing. We love him so much.
At the moment, Robyn is sitting in a chair holding Ezra while he rests. They’re beautiful.