I’m not sure where to begin when describing these past couple of days. I desperately want to feel hopeful, and thank goodness Ollie does seems in good spirits when his pain is managed, but the symptoms just keep getting worse and worse, and communication break-downs have exacerbated the frustration and discouragement. So much is going wrong, and it is hard to not feel overwhelmed and pessimistic. This is where my internet sleuthing haunts me – I’ve read many stories with similar details, and I know they do not end well. I am sure those parents also held out hope, looking for the silver lining, only to be crushed by the cruel reality of this disease. Didn’t they all think, like me, my child is too special to die?
We decided we needed expert help with pain management on Tuesday, and Ollie and I once again visited the ER. After six LONG hours, we were admitted to the 8th floor. It was immediately decided that we would be admitted, but first there was no room on the oncology floor, and then there was a room, but it needed cleaning. These hours were difficult because the ER was hesitant to give him too much pain medication. Ollie was given one dose of morphine, it diminished the pain a bit, but once the pain started to escalate, I requested more medicine. I was told we would have to wait an hour before he could have more, which was unacceptable to me. The nurse paged the doctor, and came back with another dose. Unfortunately, this whole process took about 30 minutes, and then it takes another 20 minutes for the pain meds to kick in, so that was an hour of worsening pain. This process – administration of a low dose of morphine, temporary relief, return of pain, back-and-forth between the nurse and doc, more medicine, and an excruciating wait for the effects – was repeated twice in the ER, and five times once we were in the room. By the morning, I was exhausted and frustrated. I told our medical team that the current process was not working, and with the consultation of pain management doctors, we now seem to have the pain minimized. He is now on scheduled oxytocin, with morphine and oxycodone as needed for spikes in pain. Obviously he is very groggy, and spends much of the time sleeping, but I much prefer this to the crying and begging me to make the pain stop. I cried a little last night when he said, “Mommy. I feel comfortable.” it was such a grateful statement.
He is also having regular fevers, as high as 104 degrees. Nothing is growing on his cultures, so this seems to be a symptom of the cancer. But the worst news we have received is a bone scan done yesterday shows a new lesion on his skull. The team here in Birmingham is unable to determine if this is cancer without a corroborating MIBG scan. The soonest the scan can be done here in Birmingham is Wednesday (the radioactive dye must be ordered, shipped, injected into Ollie, and given 24 hours to work through his body). The bone scan has been sent to Atlanta, and should arrive there tomorrow morning. If the radiologists there are able to make a determination that this is cancer growth, Ollie is off his current study, and will likely start MIBG therapy as soon as there is an opening. I’m not sure I have ever been this scared and discouraged. What else would cause a lesion on his skull? Especially in addition to the fevers and pain. I am doing my best to advocate for some type of intervention before next Wednesday – I just can’t stand the thought of doing nothing for a week while waiting for the MIBG scan. Neuroblastoma is fast, and I don’t want it to have another week of uninhibited growth. This news, in addition to the toll of several days witnessing my son suffer, have taken me to a very dark place. I want to stop the thoughts I am having, but it is hard to feel optimistic. perhaps those of you reading this can send us positive energy.
Ollie’s feeding tube was put in today, after a couple of days of frustration and miscommunication between me and our nurse practitioner. Both Anthony and I became very squeaky wheels this morning when more and more delays occurred, and not surprisingly, after calls to several people, including the patient care advocate, Ollie was taken to surgery, sedated, and had the tube placed. The biggest challenge of so many delays was that he could not eat or drink while waiting for insertion. He is incredibly dry, and sips on water constantly. He cannot go more than 20 minutes without water. Our nurse tried to cut off water at midnight, but after insistence on my part that he can have clear liquids up to a few hours beforehand, she checked with the doctor, and gave permission for water until 4 am. But yesterday, the procedure was canceled around 10 am (6 hours without water) and today the tube was not placed until after noon (8 hours without water). It was very difficult to have Ollie beg for water and be unable to tell him when he would be able to drink. But we are now getting nutrition into his emaciated body (his is complaining that his tummy hurts – no doubt. It is working for the first time in quite a while). One new challenge is getting him to take pills with the tube. He had transformed into an expert pill popper, taking them without hesitation or trouble. It really was amazing how easily he would take pills. But now he has lost some of that confidence because of the tube down his throat, and the preferred pain medicine must be taken as a pill. He has taken it once, and did cry beforehand, gagged a little, and said he felt sick afterwards, but did not throw up. I am hoping we can build on this success.
These days are reminders to me that as the person most intimately familiar with Ollie and his specific situation, and likely the only person with a top priority of his comfort, I must always speak up. The nurses have multiple patients to attend to, and are likely focused on the best possible health outcomes, prioritizing protocols, like the nurse insisting that he cannot have water after midnight until I pushed the issue. Another example of this is Tylenol. Very often, if there is risk of fever, we are told Ollie has to take Tylenol as a preventative measure. However, he HATES taking Tylenol, and I would rather conserve the energy of begging/demanding/bribing to get him to take medicines for something that is essential – like the study drug. Why can’t we wait to see if he gets a fever, and then give the Tylenol? I feel a little more confident in refusing Tylenol as preventative after hearing the same thoughts from my very favorite doctor. Most often, the nurses and doctors and I can find a strategy that minimizes discomfort without sacrificing health objectives, but only after I assert myself into the process.
For now, my focus is on Ollie’s comfort. I also want to get back into the fight – I am ready to take some kind of action to put up our best effort to stop the cancer. This is when I feel the most hopeful. And I hate the circumstances, but I kind of like being back on the 8th floor. As we wheeled in at 1 am Wednesday morning, I felt comforted by the familiar smells and faces. And we had a wonderful visit yesterday from David from radiation, Ollie’s favorite medical professional he has interacted with. Even as doped up as Ollie was, his face lit up when David walked in. I want to see Ollie happy – he is such a sweet little boy when he feels good, and I miss his humor and enthusiasm.