I’m sitting in the surgery waiting room as I write today. I’m here with Jack’s Nana, Da, Opa, and his favorite person, his dad:
Jack has never abided by any plan devised by grownups, and he didn’t today, either. The plan was to take him to surgery tomorrow morning, as I mentioned in the last post. Unfortunately, today we saw what I would consider a precipitous decline. This morning, Jack seemed pretty good. He even examined his favorite frog rattle and pulled mommy’s hair a bit. But he was very drowsy. As the morning wore on, I held him a lot and rocked him, and noticed him making a few gagging noises here or there. Around noon he brought up a lot of saliva. He was very groggy. I started to panic, feeling that the swallowing issue was progressing and I asked the nurse and doctors to please look into this. At the same time, John noted that Jack’s right hand had developed a regular tremor.
A flurry of activity ensued. The PICU doctors felt that it would be best to get a breathing tube in him to prevent choking (which meant more sedation) and to move toward surgery immediately, rather than waiting.
Now, I will back up a bit. Earlier this morning, the neurosurgeon informed us of the risks of the biopsy procedure that Jack was scheduled to undergo tomorrow (Thursday). The biopsy procedure introduces the risk of tumor hemorrhage. If the tumor hemorrhages during the operation, the surgeon will move into excision mode- trying to remove the whole tumor, which is dangerous. It can be fatal. I spent the day processing that this may be our last day with Jack.
With this on our minds, we stayed with Jack while everyone flew around us in the ICU preparing for emergency surgery. We were holding him close right up to and even during the sedation process. We sang to him and tried to reassure him. I feel a tremendous sense of relief that our love was all around Jack when he went under. He won’t be aware of one second in which we weren’t with him.
A CT scan followed. The decline was NOT the result of a tumor hemorrhage. (Finally, a spot of good news!) Dr. Walter, Jack’s oncology doctor, met with us and explained that the fluid buildup Jack’s brain had reached its maximum. Jack’s flexible little skull just cannot flex any more, which is what had been keeping the dangerous pressure at bay. The main concern now is relieving that pressure. There are various means of doing this, but the surgeon will determine which of these will be the best option for Jack when he goes in and sees the situation.
So, to recap, here’s what’s happening right now:
Jack is undergoing a very dangerous operation which will do two things. First, and most immediately importantly, the surgeon will find a way to relieve the pressure by draining off the excess cerebral-spinal fluid. Second, the biopsy will be done.
In the best case scenario, we will learn that the fluid was successfully drained or the pressure otherwise relieved, and that the tumor did NOT hemorrhage during the biopsy. We can then proceed with the initial plan: find out what this cancer is and do a few rounds of chemo to reduce its size prior to a second operation to remove it.
The not-so-good scenario would be that the tumor will hemorrhage during the biopsy, requiring the surgeon to move fast to try to remove all of the tumor, without the benefit of prior chemo. This will mean “a lot of blood transfusions, and a very dangerous surgery for Jack.” Jack will have a tough recovery, but will pull through and we’ll take it from there.
I’ve already talked about the worst case scenario, above, and that’s what we’re all sitting in this waiting room trying not to think about right now.
Time to think about happier things. Here’s a picture of Jack that I want to share with you all from Christmas. Yes, you guessed it, our “Jack-in-the-box”:
We have received so many kind words, messages of support, food, and prayers these past few days. Last night, I was lying in bed next to Jack’s empty crib, and I pictured all the faces of people who know about and are praying for or otherwise thinking about Jack. People I know, people I sort-of know, and so many people on the far edges of this ripple that I have never met who are supporting us. A distant cousin’s prayer group, Folks in the Mothers of Multiples group here in Delaware. Old friends from grad school with whom I had fallen out of touch. I imagine all of you packed into one big room, and the size of that crowd is astonishing. It brings us all more comfort than you know, and it certainly helps me to sleep at night. We can’t respond to a fifth of you right now, but rest assured that we will ask for help and will reach out, or have close friends reach out on our behalf when we need you. Thank you all so much.
Please send up a prayer for Jack tonight. This is a dark and scary time. I will update in the morning.
UPDATE- 9:27p.m. Just heard that the first part of the surgery went well. Te drain is in place and Jack is prepped for the biopsy.
UPDATE- 10:39p.m. I’m sitting with my little boy. He has an external drain to release the fluid buildup, new scars, and a lot of scary tubes. But he is with us, and the surgery was uneventful. (Well, for us it was extremely eventful, I assure you.) No hemorrhages! Successful biopsy. The surgery team even saved us a tiny lock of his hair (Jack’s first haircut!), from where they had to do a little shaving. There are so many hurdles ahead. But thank God there is an ahead for us to worry about.Thank you all, thank you so much for sending so much love and light to Jack today.