Monday was a whirlwind. The hospital environment is very strange, where it seems that nothing is happening but different practitioners constantly drop by and the next thing you know, the day is over.
We received many visits from Colin’s neurosurgery/oncology team. The first was from Dr. Mohan, who is leaving town for a week but wanted to stop by and see our little trooper on his way out of town. Mom had a chance to grill him on various points regarding Colin’s tumor, which I will summarize.
The section next to the cerebellum where they resected the tumor is where tumors of this type typically grow in young children. There is also an extension down to the top of the spinal cord, which they removed a chunk of on one side. The tumor also continues under the cerebellum up around the brain stem. There is an artery that runs down this area that supplies the brain stem and pons that creates risks to surgery in that region.
The access to the top of the spinal cord and the other tentacle that loops to the anterior side of the cerebellum is through the side of the head, not the back, which was the approach for the first surgery. While the surgeons could potentially have gotten more aggressive in their removal of material from the first surgery, the growth pattern of the tumor suggested that this was a different tumor line that might be more responsive to chemotherapy. Also, there is no way to physically access the rest of the tumor through a single approach.
Dr. Mohan opined that they have a good chance of completely resecting the areas of tumor that extend to the top of the spinal cord. This section of tumor is the most likely to cause symptoms in Colin if it should grow larger in the near term (we’re not defining “near” and “far” at this point but using it in a relative sense). The other section, which is far more difficult to resect, is less likely to cause near term problems should it grow. However, it is related to the volume of brain fluid and could generate additional pressure. These facts are not necessarily relevant to the decision, but they are interesting.
The question is the order of treatment. If we embark on chemotherapy first, then the idea is to shrink the entire tumor (whatever is left, which is quite a bit in an unusually large tumor) and then completely resect what is left. However, additional surgery could debulk the tumor and make the chemotherapy more effective. The question is how much the surgeons can safely remove and whether that is enough to make a difference in the efficacy of the chemo.
When Dr. Jayabose contacted another pediatric oncology expert regarding recommended protocols, that doctor asked whether it would be possible to remove more of the tumor. This doctor was not looking at MRIs and had fairly general details of the case, but it was enough to cause Dr. Jayabose to return to the neurosurgery team to bring up the possibility of debulking surgery prior to chemo.
Currently, the neurosurgeons are awaiting outside opinions on the feasibility of a surgical approach; this information will come from surgeons who have access to all of the available imaging. Today, we are imagining that Colin has the best chance by undergoing neurosurgery #2 before the chemo. This is under the presumption that the tumor will not be completely removed and will require some shrinkage in order to be removed in neurosurgery #3. This would be followed by conformal radiation.
Tomorrow, Colin undergoes a minor surgical procedure to install the port, which will be necessary for the chemo that is currently viewed as unavoidable (if a surgeon approached us with a proposal to completely resect the tumor, we would decline the offer). The port will also make all of the interim procedures easier by providing a comfortable access for medications, blood draws, etc.
The surgery tomorrow will not impact neurosurgery #2, which will not take place until next Thursday, so Colin will have plenty of time to recover, bulk up and start physical therapy. We will remain in the PICU until the drain is removed or converted into a shunt. The determination on which route to take will be made this week. So far, he has fared well with the drain, as there is no sign of infection. We await cytology results on the bags of brain fluid collected so far.
If necessary, we will transfer to the third floor pediatric area to await the next surgery rather than returning home in the interim. The recovery from the next surgery will be more lengthy than the first. The next surgery is much riskier and will entail significant monitoring to determine how close the surgeons are to various nerves. The technology to do this was not available a decade ago, Dr. Mohan said.
The next surgery will also not be scheduled as an urgent procedure where we grab any time slot necessary; Colin will have the first O.R. time of the day. Dr. Mohan assured us that he will fight tooth and nail to block out our time.
Chemotherapy will follow the surgery much as we had initially planned to start chemotherapy following the first surgery. Fortunately, the life port will be well in place by then, so Colin will be ready to go and not have to undergo another procedure before beginning treatments.
As it stands, we are looking at a minimum of a month total in the hospital. This is an unimaginable change from our life a short time ago. We are fortunate to have become part of the community of parents whose children are also in the ICU. Every story is different, and some patients are recovering from planned corrective surgery that may not be serious. However, anybody who stays for any length of time is dealing with significant health problems; it is comforting to find the support among other parents who understand the plight of a long-term stay in the unit.
However, it is all worth it, as the doctors are providing us with a real chance to cure Colin. We know that Colin wants to be well and wants the pain to stop. As for Colin’s head pain, he is still uncomfortable. This is likely from a combination of the presence of the drain, recovery from the surgery in the back of the head which cuts through neck muscles, and residual headaches from the chronic pressure. These headaches will improve over time, assuming that the pressure does not build again.
An audiologist tested Colin’s hearing today, as chemo drugs can cause hearing loss; thus, the doctors like to have a baseline to compare against. His right ear was perfect but the left ear had some fluid that showed he was not hearing in certain lower ranges. This may be a transient problem, but it’s impossible for them to determine this until the fluid is gone, so we have an ENT referral (yikes, like we need more specialists!).
Physical therapy will start after Colin recovers from tomorrow’s surgery. We have also asked for a speech therapy consult, which will help Colin recover and hopefully help him as his brain heals and his speech develops. His delays in this arena are likely the result of the hydrocephaly.
To look at Colin, he is the picture of health. He looks like a regular boy wearing a turban and sporting a bunch of tubes and gauze. We hope that his robustness serves him well as he enters an even more significant neurosurgery, followed by chemo. Both of these — not to mention the struggle going on inside his head as the tumor fights to steal his resources and edge out his most vital organ — will require his stamina and strong spirit.
Eating has continued unabated throughout the day, punctuated more and more frequently by signs of discomfort and the input > output. Perhaps it’s more accurate to say input >>> output. The doctors gave him a suppository, followed by a dose of colase, finally punctuated by a new experience for Colin: a Fleet enema.
In true Colin form, he whimpered for the injection of the magic stool-loosening elixir, then promptly fell asleep. However, he produced the necessary offering for the nurse and is happily fast asleep. He was unrousable even for to nurse, despite getting a nipple jabbed in the nose a few times. Sweet dreams!