Damian and I had a loooong week of emotionally draining appointments and conversations this past week.
I think what made it especially heavy was by finally seeing and reading with my own eyes the protocol (or plan & schedule) for this first experimental treatment. It is getting really really real. I can not tell you how grateful I am, and excited I am, for Damian to finally be getting this opportunity. A LOT of people and a lot of donations have made this possible and of course I don't take a second of this for granted. I am so ready. So so ready.
I'm also extremely anxious. The protocol is filled with regular exams, scans (ultrasounds, echocardiograms, MRIs, X-Rays, etc.), and so many many many blood draws. I am ecstatic and desperate to get Damian what I HOPE turns out to be miraculous help, and yet I still feel tremendous heavy guilt for what I'm about to put Damian through. He's only 2.
IV Port Placement
On Thursday, we met with a pediatric surgeon to talk about a surgical placement of an IV port. When Damian starts the first brain-targeted experimental treatment, hopefully in just a few more weeks, they will be needing to do a lot of blood work regularly, so an IV port was suggested so that every time Damian needs a blood sample they don't have to stick a needle in his arm and cause trauma and heavy scarring to his little veins over countless pokes. Instead, the port would allow the phlebotomist to get blood every time by sticking the needle into a little chamber that would live under his skin in his chest.
I had never seen something like this, but apparently this is extremely regular among cancer patients and others who have to get poked regularly, and the chamber can stay inside indefinitely - the surgeon we talked to says he has patients who have had theirs in for over 5 years and it's still working just fine.
But it was finding out that numbing cream is applied to the skin before anyone sticks a needle into the chamber that sold me. YES, sign me up for whatever will make this process less painful for my baby!!!
The thought of Damian going under anesthesia makes me sick to my stomach - probably partially because of my own irrational anxiety about it (I refused to do it for my own wisdom teeth extraction in high school), definitely partially from the horrible experience it was feeling and watching him suddenly go limp in my arms the last time they put him under for an MRI, but also just the idea of people operating on my baby just hurts. I know it's a good thing. But it just makes me really sick to think of more scars that have to heal on his little body. No toddler should have to go through all this.
Right after that appointment on Thursday, we went straight to the blood lab to get samples taken for an appointment we had the next day. Damian was so brave, like always, and thank goodness he seemed to be more uncomfortable rather than in pain (I can tell when he really is in pain during blood draws and it is the WORST). He continued to scream until we were back out in the hallway, where I picked him up out of the stroller and held him tight while I pointed out the colorful kids' paintings of animals that were hanging on the walls.
Liver Appointment / Feeding Tube Evaluation
Then, on Friday, we had our appointment with the GI (liver) doctor. She gave us GREAT news - that Damian's liver is still angry/irritated/enflamed/upset BUT is still doing what livers are supposed to do. However, she said she was concerned with Damian's steady BMI decline (a year ago he was in the 15th percentile and now he's at the 2nd) and asked me to consider putting in a feeding tube during the same surgery where they'll place the IV port.
We had a long conversation about it, and she even brought me a plastic baby doll with the "G" Tube parts in it and explained everything so it didn't sound so foreign to me.
I told her to go ahead and email Damian's geneticist (Damian's "Primary Investigator," aka the person overseeing Damian's experimental treatments) and the pediatric surgeon about it so I could hear their opinions, and in the event we could do the two procedures at the same time, maybe that would be the best time to do it. I'll be honest, I had known for a long time that a feeding tube was practically inevitable for Damian at some point, but I didn't think it would be happening this soon. So hearing the GI doctor say we really should consider it getting done now was a little bit of a blow. As miraculous as science is and as helpful and as positive the reviews on feeding tubes are - change is scary. New is scary. One more procedure on Damian makes me anxious.
Just to feel like I was doing my due diligence, I requested to meet with a dietician to see if there were changes I could make in Damian's diet that would make a big impact in his calorie and nutrition intake, and luckily, the GI doctor was able to find one available right then and there. The dietician gave me a lot of good advice and we made an appointment to meet in a month (after all, it takes at least a few weeks to see changes happen as a result of a change in diet), but I knew surely that the IV port surgery would happen sooner than that, so I was still a bit disheartened.
I don't know, going through all of these appointments and trying to make timeline decisions even though we STILL didn't have a start date for this treatment, and not knowing why why why the protocol wasn't even sent out for approval yet just emotionally drained me last week. Totally drained me.
The Challenge of Endurance
I typically love Sundays. My whole life I've been taught to treat Sundays differently than every other day of the week, but it wasn't until I became a mom that I realized what a benefit it is to me to take the time to NOT grind, NOT assign myself a list too-full of tasks, and just breathe and reset. Designating every Sunday as sacred has been a total life-saver.
This last Sunday, however, I felt heavy and dark and just awful all day. I felt so overwhelmed, overworked, and -- you know those dreams where you're running really hard but you're not moving an inch and it's super frustrating and anxiety-inducing? I felt like that.
I feel like I'm working my absolute hardest in the things that I can somewhat have an impact on. So to feel like I've been working so hard for over 7 months now on pushing treatment forward and yet Damian still hasn't taken one single thing - no medication, no nothing - and I've had to instead watch him deteriorate bit by bit was incredibly depressing to think about.
My logical side tries to keep reminding the rest of me that Damian's declining health isn't an appropriate way to measure the progress that has been made, at least not yet. A LOT of progress has been made and we are really really close to starting the first treatment, (albeit the delays have been extremely frustrating and some have been, in my opinion, totally unnecessary).
It's both a luxury and an irritation that Sundays are not work days and I can't spend it calling doctors and trying to push things forward. So instead, this Sunday I cried and I hurt and I meditated and I decided to read as much as I could about endurance. The act of enduring is another concept I've been taught my whole life, but it certainly hasn't meant much to me until recently. In my reading, I came across a spiritual talk by Jeffrey R. Holland given just a couple weeks ago at my undergrad alma mater about endurance during severely difficult times:
"...be aware that along [life's journey] is some degree of anguish. That's because the road...from mortal trials to celestial rewards always somehow winds through Gethsemane. And when we're invited to join the Savior of the World in that place, we should be prepared to answer the demanding question he put to Peter, James, and John, "Could ye not watch with me one hour?"
... When your life seems to be one tear, and tragedy, and heartache after another, the meaning of which and the answers to which you cannot understand, I ask you as Paul did to hope for things which are not seen but which are true. Help will come."
It is much much easier to look back at a hard time when you know how the end turns out. When I pray, really pray, I do feel God trying to comfort me and tell me things are going to be ok, that there is light at the end of this. I received that confirmation again on Sunday night. It is going to be ok. I guess I really just have to build up my stamina more for enduring the dark stretches, which seem to get longer and longer in length. By the way, I'm OPEN to suggestions on how to do that!!! Anyone have access to super soldier serum?
The Protocol Has Been SUBMITTED! & More Valuable Information
If I had posted this on Sunday like I planned to, I would have ended this post right after the Captain America reference. But I'm glad I didn't. I've noticed that whenever I feel like I'm nearing my breaking point, God gives me a boost. And this week was no different.
On Monday, I called a bunch of Damian's doctors, like usual, starving for answers, like usual. But by some miracle this time, I got all of them!!
To the geneticist: DID the protocol get submitted for IRB & FDA approvals yet???
Answer: YES IT FINALLY DID!!!! And it is not unlikely that we will get approvals back this week!! Which would then make a February start date for this treatment (at least starting all the baseline evaluations) probable!! Once the approvals are in and the drug shipment from the pharmaceutical company to CHLA is scheduled, I think we can FINALLY get a start date!! From the protocol, we can at least make the assumption that the first dose will be given on a Tuesday.
To the GI doctor: Is it confirmed that the feeding tube and the IV port can be placed in the same surgery? (I had all my follow up questions ready but...)
Answer: It turns out they cannot be done in the same surgery after all. The GI doctor spoke with the pediatric surgeon and the surgeon said that placing in IV port requires the most sterile environment, of course, since they will be placing a direct line into a major blood stream. Placing a feeding tube that goes directly into the stomach is practically the opposite of sterile. In no way should there be the slightest risk of stomach bile getting into the blood stream. The GI doctor and I hadn't thought of that, but we both agreed that it seemed like an obvious choice now not to combine the surgeries.
Additionally, from the basic information on Damian that the surgeon has, he believes a feeding tube placement procedure would require a lot more forethought and planning than normal. Because Damian's liver and spleen are so enlarged, the surgeon doesn't want to risk nicking the liver on his way to the stomach and causing a big issue. He also wasn't keen on placing the type of tube the GI doctor had suggested because of the difficulty of placement posed by Damian's liver being in the way, so we'll need to have a larger discussion on which type of feeding tube (G-Tube, J-Tube, G-J Tube, etc.) is going to be the safest and most effective specifically for Damian, both in the initial placement of it, and in the long-term goals for it.
I told the GI doctor about my meeting with the dietician and how we had planned to meet again at the beginning of March to see if our diet adjustments made a difference. I told her that I know she had said Damian was in the 2nd percentile for BMI, but that only means so much to me. I wouldn't dare put off a surgery if it was not in Damian's best interest to put it off, but I needed her to tell me if that was the case. To my great relief, she told me confidently that Damian is not at all in dire need of getting a feeding tube in the next month. She simply thought it would be good to get it done as long as he was getting put under anesthesia anyway, but since he can't do both at the same time, there was no rush to get it done this month. She said she thought it was great that we were trying something different to enrich Damian's diet and said she would join the dietician and I in March to see if Damian has put on more weight and they can assess at that point how urgently Damian needs a feeding tube, if at all.
A nurse or coordinator from the pediatric surgery department called me to schedule Damian's IV port placement surgery. The soonest they can do it is Friday, February 25th. Knowing now that approvals for the treatment could come this week, I asked if they could do it any sooner. She said if there are any cancellations, she'll try to move us up, but for now, this is the best they can do.
I don't know if that means the treatment can't start until after the IV port is placed or if it just means the first few blood draws will have to be done via a blood vein in his arm like normal, but regardless...
What a BLESSING to have gotten so much information over the past couple days. It's what I desperately needed and more than I even hoped for. To top things off, this morning I was FINALLY FINALLY FINALLY notified that the waivers that the state needed to process our disability assistance applications FINALLY FINALLY came through and that Damian's medical finance help will be activated later this week. That means (I hope!!!) we can FINALLY FINALLY FINALLY get the special needs equipment that we've had on hold since July!!!!!
It always always seems to be that my hardest days happen literally the day before we get a bunch of good news (or at least really informative news). I just have to keep remembering that for next time. I can "watch for an hour." I can watch for an hour.
Please note: I am not a medical professional nor do I come from a medical background. If I get details, terms, or anything else wrong it is an honest mistake and I will correct it when I am made aware of it.