I am grateful for all the work and care and efforts of the medical professionals on behalf of my little boy. So many at the two different hospitals that I have trouble keeping them straight—orthopedist, two neurosurgeons, urologist, spinal cord injury specialist, rehabilitation physician, oncologist, neuro trauma recovery specialists, physical therapists, occupational therapists, and more amazing nurses than I can count. They are saving his life and his physical functions, and also his quality of life.

I am grateful for the wonderful people who have stepped in to help us during this time. We have had the kindest friends and relatives caring for our animals and our other six children, even as it has turned out to be longer than we could have predicted. How amazing is someone who steps up to care for three kids for an entire month? It has been a huge blessing to be able to focus on weathering this crisis and know that the rest are being so well cared for.

I am going to try this, as a method to focus on gratitude this next week—even though this is a very difficult time to do that. Or, maybe especially because this is a very hard time to do that. I welcome anyone so inclined to join in with me. Here goes. I am grateful that, when Ri fell from a tree several months ago, we were set on the path of discovering what was wrong with my little boy earlier than we otherwise would have been. If it had been even just a month longer before we found the tumor, it likely would have caused far more (potentially permanent) damage to his nervous system as well as other organs.

Our plan before these last few weeks was to set aside what we would have otherwise spent on gifts for each other this Christmas, as well as our birthdays and anniversary next year, and instead go on a trip for just the two of us together as soon as travel is an option again.

Nothing. Or rather, a month of both being there for our boy when he most needs us, rather than being off earning money at our normal income rate. I like that much better, that’s much less depressing.

Ri is working hard and making progress every day. He loves the physical therapy. Occupational therapy, not so much. In his little free time, he is enjoying exploring all the public areas of this large hospital, as he was stuck only on the pediatrics floor of the last one. He zooms all over the place in his little wheelchair, often wearing his Flash superhero costume, and is beginning to have people who recognize him stopping to chat with him all over the hospital. We are concerned about his surgery incision site, which was kind of red and puffy after the long drive down here, and is now displaying signs of infection. They started him on an antibiotic for it the night before last, so hopefully it will improve soon.

We got the pathology report back!!! The tumor is a pilocytic astrocytoma, which is pretty benign. We have high hopes that this means he won’t need chemo or radiation therapy, but we won’t know until his next MRI in three weeks. We made it down here okay, and Ri met his therapists and was evaluated by them. Tomorrow the work begins.

We aren’t down at the rehab clinic yet. We were told late in the day on Thursday that they wouldn’t have a bed available for him until Monday, so that’s when we’ll be driving down. He is making lots of progress on his stamina for sitting up and his pain is down a ton, so maybe making the drive a few days later will be better for him anyways. Our childcare arrangements for our other bio kids were up on Friday morning, though, so we are taking turns being back with them at home (just over an hour from the hospital). We’ve also had our foster girls back home some, but not as much—they can’t be with us when we go over to switch, as our state is locking down again and DHS doesn’t want foster kids crossing state lines. I think it’s good for the other six to get in some parent time this weekend.

He is definitely going to the two-week physical therapy rehab clinic, and they are talking about sending him on Friday. We’ll be driving him to the city about 4.5 hours south of here (or normally that long; we are going to have to stop for lots of breaks and he is going to have to lie down across the seats for most of the trip). Apparently he has to be checked out of the hospital and into the clinic within one business day, because if he spends a night out of a facility the insurance will balk at paying for the inpatient clinic under the argument that he clearly doesn’t need inpatient care. So the plan is to discharge him very early so we have time to take things slowly and still get him in before the end of the business day. We’re going to pick up our other bio kids from the cousins’ house near here and all drive down together so we can have a bit of family time together, then fly the three bigger kids to go stay with my parents from there. Our foster girls are continuing to stay with friends at home. Dh’s work has been great. His boss is picking through all their cases to take everything that has to be done in person and give dh everything that can be done remotely. So while we’re down there dh will work remotely during the day while I’m with Ri, and then we’ll switch for the late afternoon/evening, and take turns with him at night.

There’s no way we would ever consider leaving our six-year-old alone at some place. That has never been on the table.

In our own state, we are a million miles from everything. There are no large towns in our state within four hours’ drive. But we live only slightly more than an hour from the state capital of our neighboring state, which is where our boy is currently hospitalized. If we lived in this state where we are now, we could have the in-home therapy sessions, but apparently our home state will not allow it.

Baby steps in the right direction. He is working on his physical therapy, and on sitting up for lengthening periods of time. They’re talking about a leg brace. Also, possibly sending him to a sort of physical therapy boot camp inpatient clinic for a week or two when he is ready to be discharged after his surgery recovery, but there isn’t a place like that in this state, so we would need to travel to somewhere where it is available attached to a children’s hospital. Another option is a program where a physical therapist comes to work with him at our home, but because we live over the border in a super high-restriction state, they said it is unlikely our state would allow that now because of covid. Us driving an hour to a clinic three to five times a week is another possibility.

My gut reaction to the idea of “poking holes in my baby” was a horrified no—but I recognize that if it were a societal norm for me and a part of my culture, I would probably have been fine with doing it. That is, after all, why my older son was circumcised. It seemed normal, and I never really considered the idea of not having him circumcised until I watched the procedure. It was awful. Dh and I had a long and intense debate about whether or not to have our second son circumcised. In the end, I decided to defer to him on how a boy would be likely to feel about being the one that did not align with that norm, but I was very torn about it. I’m now pretty uncomfortable with circumcision for non-religious reasons.

MRI looked good on what they could see, but couldn’t see clearly enough to tell if/how much tumor is left, so we will have to wait for another MRI in a few weeks to know.

A specialist did an assessment this morning, and he had at least some motor response back in all but one muscle area of his left leg. And it’s definitely getting stronger—from a twitch up to a little wobble when asked to move his foot. His right leg movement is mostly normal except that his hip is weak, and his knee slightly weakened. His sensory perception is affected from the hip down on the right and from the armpit down on the left, with nothing registering in his left leg at the levels of pressure used for the assessment—but he does now have some feeling to stronger pressure/tickling. It’s kind of scary still but definitely moving in the right direction, and will hopefully continue to improve. The best moment was when he moved his knee for the three doctors who came to see him and they all made a kind of spontaneous happy exclamation noise—and then he finally relaxed and let go of his fear as they told him how great that was and he saw how happy they all were. And since then he is acting more like himself and has bought into this idea that his legs not feeling normal yet really is okay.

The hospital’s COVID policy of only one parent at a time would still be awful, but easier to bear if it made logical sense to prevent the spread. But surely having the same two people per child in the hospital, but passing through all the hallways and elevators several times a day and having contact with people outside each time they switch off with the other parent, would be more likely to spread coronavirus than those same people staying in a closed room with their child the whole time, wouldn’t it? It just feels sadistic.

All in all, while there are still a lot of things to wait and see on, it’s looking pretty successful and he could have had significantly worse damage.

Ri’s surgery was this morning. The doctor said he got over 90% of the tumor, and possibly all of it. (Apparently there were some cells left behind that were unclear if they were tumor cells or not). Ri was screaming and screaming afterwards, even on three different serious pain meds. He wanted both of us, but the recovery room would not allow it. It wasn’t until a few hours after he woke up and they had transferred him to the PICU that they made an exception to let us both be with him together for 20 minutes, when he finally stopped screaming. He can’t move his left leg, and had no sensation in it, but now the feeling is coming back, creeping down from the top. He can now feel down to a couple of inches below the knee, so hopefully that will continue and motion will follow. His right leg was numb at first, too, but he could always move it and the feeling came back to it quickly.

And in the meantime, Ri is doing better than he has in weeks. He’s on a medication to get the swelling in and around his spine down before the surgery, so he’s moving better and with less pain. He has had a couple of falls, though, which is concerning.

The surgery will be on Thursday. After all his other tests came out clear, they decided to do it then instead of pulling everyone in on the weekend. He and all the kids were excited to have him home for the weekend, and we squeezed two birthdays as well as a Halloween celebration in while we had the chance. Things are a whirlwind, making arrangements and packing and swinging between different levels of grief while not losing it in front of the kids and trying to enjoy these last few days for of family time all together. Also trying to get everyone’s simplified schoolwork completely open and go with instructions written out for the various people who will be helping them with school. (My kids homeschool through a charter, which means we cannot just take off several weeks entirely whenever we want.) Ri has to be quarantined after his covid swab Tuesday morning, and my foster girls have to go to visitation during that time, so they are going to respite with a friend of mine tonight. My other kids are going to stay with cousins on Wednesday.

She has gone back to live with her former foster parents. We wanted to make it possible for the sisters to all be together, but it didn’t work out. In the end, I am glad she was happily settled back with them before my son’s diagnosis and the ensuing chaos.

My six-year-old son was diagnosed with a tumor in his spine two days ago. He will be having surgery on Thursday, and will spend at least a week in the hospital afterwards. Around that point in his recovery we will start to get an idea if damage has been done to his lower nervous system and we will also get the biopsy tests back and know more about what he will be needing as far as chemo or radiation. I am mostly functioning through this by focusing on the things I need to do and staying busy, but whenever I have time to think about it I break down. I hesitated to post anything, because I didn't want to stop to think about it all--but you guys have been here all along. You were my buddies before he was ever born, and got the new baby post, and heard about his breathing problems as a baby, and our moves, and his toe tourniquet and growth and education. And you've been here for our family's moves and struggles and recent experiences with foster care. I figure if I'm going to keep posting here, I'm probably going to need to mention it at some point. We welcome anyone's prayers on behalf of our son. His name is Mahonri, but we call him Ri. (With a long i, like the grain.)

I love the Screwtape Letters. It has so many fascinating insights into human nature and thought. And I especially love how it gradually adjusts my perspective until the ending affects me exactly the opposite of how I would normally respond.

Actually, I love that this is his response to the prompt "Falling". Starting out flying with that prompt makes you think of a physical fall, but the real falling is the turtle's emotion when he understands what is happening.

We are having some glimpses of progress and some good moments, even a whole good day on Wednesday. I think I see the light at the end of the tunnel.