Finn the Burrito

These past few days at home have been lovely and exhausting.  After two weeks of being in the hospital, Finn is suffering from some pretty significant separation anxiety and doesn't want me to put him down at all.  My parents were here until this morning, but they weren't really much help, since Finn only wants me to hold him.  So my house is a mess, I have laundry that needs to be done, and did I mention my house is a mess?  Finn is mostly happy (when he’s being held), but he’s had a few horrifying sleep terrors that break my heart.  I know he isn’t awake, but he screams like he did after getting his IV put in last week, and it’s almost impossible to comfort him.  When he’s awake I’m trying to make him feel secure and loved as much as possible, and I really hope that’s enough to get him over this.

Remember how I was so worried about getting a nanny?  I am now so thankful I went the nanny route instead of going with daycare.  M has been such a huge and enormous help.  She stayed with us while Finn was waiting for surgery and kept him fairly happy when he was hungry, while I walked the floors with my doula (all that time with laboring women has made her really good with moms under stress - I'm so glad she offered to come and spend time with me).  M came up to the hospital every day, picked things up from the house when I needed them, fed the cats, and basically made sure I could focus on being there with Finn or could get away for fresh air when I needed a break.  Finn is happy with her, too, so I’m not overly worried about how he’s going to do when I go back to work tomorrow.

It’ll probably be the end of the week before we get the pathology results from the reference lab.  In the meantime, it really does appear that this tumor is the only one – his bone scan was negative on Thursday.  We ended up being able to do it without anesthesia; the tech wrapped him up like a burrito and put him in the scanner and got great pictures.  I know Finn was scared at first, but after the first few minutes I was able to rub his head, and I talked to him the whole time, and he actually fell asleep towards the end.  I would have been happier if he didn’t have to have it, but at least we were able to do it without exposing him to general anesthesia for the fifth time in two weeks.

The prognosis is still very good, but I’m still living in a constant state of fear.  I’m so thankful for all the prayers, words of comfort, research study information and prayer requests on blogs (and elsewhere) that you all have given me and Finn.  

Wednesday Update

Finn yesterday

Yesterday was a rough day for little Finn.  He hurt from his surgery and his chest tube, and the chest tube and IVs made it hard to move him easily or hold him and nurse him.  He still woke up with a little smile on his face, though, and by the end of the day was interested in playing with some of his toys for a little bit (thanks to a lot of Tylenol and a little morphine).  He slept fairly well last night and this morning, until we had to go downstairs for a chest x-ray.  He didn't like the x-ray, but the results were good, and a little after noon, the surgeon came in and took out his chest tube and the IV line he had in his femoral vein.  Finn was much happier after than, and even more so once we were able to take all the monitors off of him. 

He has to get a bone scan tomorrow (the one he was supposed to get last week, but nuclear medicine wanted to postpone it).  He won't be able to eat after 7ish, he'll get an injection of the tracer for the bone scan at 8:30, and then the scan is at 11.  He'll have to have general anesthesia for this test (which will be the 5th time he's had general anesthesia in 2 weeks), but the scan should only be about an hour, so hopefully he won't feel too badly after it's done.  The best part is, after the scan, we get to go home!

The preliminary pathology from the tumor is a little - well, a lot - weird.  It looks like it's a neuroblastoma, but a lot of the tumor was necrotic (dead) tissue, which is not typically seen in neuroblastomas.  They saved the best part of the specimen to send off to a special lab with a pathologist who specializes in neuroblastoma.  He'll look at the slides and do genetic testing on the tumor and with that will be able to confirm the diagnosis of neuroblastoma. The big question is - what do we do now?  Dr B has never seen a case that looks like this, with most of the tumor consisting of dead or dying tissue, so she isn't sure what the next step should be.  Her plan is to enlist the aid of some of the national experts in neuroblastoma once we have the information from the reference lab, to see if this is something any of them have seen before, and to help us come up with a plan of what to do next.

I'm not exactly sure what this means, except that we won't be starting chemotherapy right away.  Instead we have at least a week, but probably two, before we have a plan and can get started with the next step.  I'm going to go back to work next week, which is good, since I have absolutely no leave left, and these two weeks off have been without pay (thank goodness for the savings account I have that was earmarked for TTC #2); but also bad, because I really don't ever want to leave my boy again after what he's been through so far.

Finn's next to me, fighting sleep.  I think I'm going to lie down with him and see if we can both get a good night's sleep, now that he's unhooked from all the tubes and wires.

Surgery Report

Finn finally got out of surgery around 5:15 or so, but I didn't get to see him until after 6:30, and he didn't eat until we were back in the room, around 7:30.  That's 12 hours without food!  The good news is that he made it through surgery without any major complications, and is back in our room and currently asleep in my lap - chest tube and all.  About an hour ago I was pumping on one side while he fed on the other, trying to balance the bottle I was pumping into between his chest tube and my body - definitely not something I ever imagined doing.

The bad news is they couldn't get the whole tumor.  The surgeon said it extended more into the neck than he expected based on the MRI, and while he could have tried to get as much in the neck as he could see, he was afraid he'd end up damaging something important in the neck.  In addition, the tumor was attached to the subclavian artery (I think, it might have been the vein) and a couple of nerves.  If he'd tried to remove it all, there's a good chance Finn would have ended up with permanent nerve damage or a lot of bleeding, which just isn't worth it, since his chance of a cure with chemo is so high.  The frozen section sent to pathology during surgery confirmed the diagnosis of neuroblastoma, but we won't know the specifics for sure until the final pathology is back; the oncologist said we should get at least an early read on the pathology tomorrow.

This isn't the news I'd hoped for, but the important thing right now is that Finn made it through surgery just fine.  I was so scared the whole time he was back, but he did even better than expected, since he's well enough to be in a regular room with me, instead of the PICU!  I'm going to focus on that right now, and worry about what happens next once we actually have a plan.

Thank you all for all your thoughts and prayers, and for the prayer requests on your blogs.  I could definitely feel them today, and I hope Finn could, too.

Waiting Waiting Waiting

Finn this morning

 I took Finn down to surgery at 1 (eastern), but they didn't actually get started until 3!  The surgeon said to anticipate 1.5-2 hours, so there's still a while to go.  They have been great about calling with updates, so at least I knew that it was delayed.  I hope Finn wasn't awake all that time; the poor boy was so hungry!

The anesthesiologist that I met with last night was a jerk, but the one today was great.  After he and the surgeon discussed things they would need during surgery, I said to him, "I'm not sure if it would be worse not knowing all this medical stuff, or if it's worse knowing exactly what it is you're talking about."  He said, "I've had a child undergo surgery before, so I can't tell you not to worry.  But I can tell you that we do surgeries on infants all the time, and I'm not worried."  I'm still worried, but it was reassuring to hear him say that.

There's a slight chance that Finn will come back to the room after surgery, but more than likely he'll go to the PICU.  The PICU staff just came by to get his crib and diapers, so I'm preparing for him to be spending the night there.  So far it looks like I'll be able to stay in this room while he's there, though.

And now I'm going to go catch up on some blogs while I wait.

We're Home!

We are home for the weekend - we got home yesterday afternoon, and I am so happy to be here. Finn and I slept last night from 10:30 until 7:45 this morning, just waking a few times for lazy feeding, but otherwise not moving at all, it was just what we needed after a week of horrible hospital sleep. Finn was gone for hours for his tests on Wednesday. I took him down for his MRI at 6:30 (he loves riding in my lap in the wheelchair); the anesthesiologist saw us waiting and said, "Is this the baby for the MRI?" I said yes and he said, "The baby with CANCER for the MRI?" and again I said yes. "The baby with the neuroblastoma for the MRI?" Seriously? "Yes!" "Wow, he's looks really healthy." Thanks.

 I almost started to cry when I left him, especially when I bent down to kiss him and he grabbed my head and gave me a big open mouthed kiss in response, but I managed to hold it together until I was out of his sight, and then I cried. The wait for him to get his MRI, his MIGB and his bone marrow biopsy was endless, but it helped to have NannyM (as she's now calling herself!) and my sister Jamie waiting with me. It was sometime after noon before I got the call from recovery; I could hear him crying in the background as the nurse asked me to please come down there right away. She couldn't calm him down, and didn't know if he was in pain from the bone marrow biopsy or just hungry. He did calm down once I was there, but still was very disoriented and upset. We decided it was just hunger and post-anesthesia confusion that was making him so upset, and they let us go back to our room, which helped more than anything. The rest of the day was quiet; once Finn woke up we went outside for a little bit. By bedtime, Finn was happy again.

Thursday was much faster, he was to be done with his scan in less than an hour, so I waited in the surgery waiting room for him. I heard my name called from the doorway and looked up to see a nurse holding Finn, who looked drowsy, but smiled at me as soon as I got close to him. He was almost 100% within an hour - so much better than Wednesday.

Here's all the good news from the tests:
 The MRI showed no other tumors
The MIBG was negative
The bone marrow biopsy was negative

All GREAT news! The tumor causing the Horner's appears to be the only tumor, so if the surgeon can get it all, then it's a cure and Finn won't need chemo. This is such wonderful and amazing news, especially since the initial news last Friday made it sound like he had tumors everywhere. I'm so thankful for all the good thoughts and prayers for Finn this week; I'm not sure how I would have made it through the past week without them. Thank you all for such wonderful support.

His surgery is scheduled for Monday. We have to go back to the hospital on Sunday night, and then Finn has to go without eating from 7:30am until his surgery at 1:30. I'm worried about how he's going to do with that, I'm scared about the surgery, and I'm so worried about how much pain he's going to be in after surgery. But right now I'm managing to mostly focus on just loving him, so he's happy, well rested and prepared for surgery.

Fear

I have never been so afraid in my entire life.  Even though the prognosis is good, and the doctors are very optimistic, I know there is still so much uncertainty.  I look down at my sweet boy's little face and am so very scared for him.

He is still able to smile and laugh, but I can see already how this experience has affected him.  He's content to be carried with his head looking back over my shoulder, where before now he had insisted that he be carried facing forward.  If someone else is holding him, he frequently seeks me out with his eyes, and gets upset if he can't see me - a little young for separation anxiety, but I guess the stress of this week is getting to him, too.

We did get the oncologist to write an order to let us go outside, so yesterday we went for two walks out in the suddenly perfect summer weather.  Last night on our walk I couldn't help but think of what a great walk we'd be having in his super cool stroller if the MRI had turned out differently; I've been looking forward to cooler evenings so we could start going for long walks before bed.

We pass people in the halls who all comment, "what a cute baby" and then I see the sympathy in their eyes when they notice his hospital bracelet.  I see sick babies and children in the rooms around me, and their tired and stressed parents and feel sorry for them, and then feel the shock of realizing that I'm one of them.

This feels like a horrible nightmare that I just can't wake up from.  Finn gets an IV today so they can give him the contrast for his scans on Wednesday and Thursday.  I remember Claire saying how general anesthesia quickly became a nonissue for her when Fiona was so sick last year, and now I'm surprised to discover I feel the same way.  I'm not at all worried about his anesthesia for tomorrow, I'm just worried about how difficult it is going to be for them to start an IV on him today; I hope they get it on the first try and that he doesn't hurt too much from it.

A Better Day

Getting some use out of the crib

This morning started with the nurse poking her head in our room to let us know that transport was on their way to take us to radiology.  (As an aside, the nurses are encouraging our cosleeping, and even helped out with putting the crib next to the bed to help keep him safe, which is so great.  I don't think I'd get a wink of sleep if they made me put Finn in his crib.)  Finn woke up on his own right before they came, and I had time to wash my face and put on a jacket to cover up my nursing mom cleavage.  He loves riding in the wheelchair.  I hold him facing forward and he takes it all in as I chat to him about what we're seeing and kiss his little head.

The ultrasound was the easiest test so far; he actually seemed to enjoy it, and I was able to watch the screen for a lot of it.  The tech didn't see anything at all on his kidneys, but we did see one cyst on his spleen - weird for an infant, but it's definitely not metastatic cancer.  Shortly after that the surgeon, Dr S, showed up with the oncologist.  There had been some concern that the MRI might need to be repeated, but he was happy with the images and didn't think we needed to do anymore, which was a huge relief.  He couldn't explain the cyst, but said that it was something we could worry about later, if we need to, and I'm fine with that.

The plan right now is to get the MIBG scan this week, which will tell us if the tumor in his chest really is the only tumor.  If it is, he'll get surgery early next week; the surgeon will first try thorascopically to completely remove the tumor, and if that's not possible, he'll at least get a biopsy to confirm the diagnosis.  If he can't get it all, Finn will definitely need chemotherapy, and the surgeon seems to think that would be curative as well.  This plan is so much better than the scenarios the oncologist was going over when we were first here - if he truly doesn't have metastatic disease, then this makes his prognosis even better, and what he'll likely have to endure so much less.

Finn looks and acts so healthy, I just can't believe that something is truly wrong with him.  He's definitely feeling the effects of my emotions and all the poking and prodding, though - he's been waking up in the middle of naps crying and he seems much more attached to me than usual.  He notices if I'm out of eye sight and get distressed very quickly.  I'm trying so hard to hold it together when he's awake, but oh I hate the thought of the pain and trauma he's going to be going through in the next few weeks.  Why does such a sweet, happy little boy have to go through something like this?  I'd gladly take it all for him, if I could.


Thank you all, from the bottom of my heart, for the thoughts and prayers and words of support.  They mean so much right now.

Yesterday and The Plan

Yesterday morning we had to be at the hospital at 7am.  Because I'm a doctor at our hospital, we got special treatment:  instead of having to wait in the radiology waiting room and then get moved to a room, they admitted Finn directly to a room on the pediatric floor, so my parents and I had a comfortable place to wait.  Of course, radiology was behind, so Finn started to get hungry and sleepy around his usual 8am time.  My mom shocked me by being able to rock Finn to sleep, so when they came to get him for MRI he was sound asleep.  I held him and was wheeled in a wheelchair down to MRI, and met with the anesthesia team and the radiology techs before they took him from me and I was sent back upstairs.  Lucky for me he was still snoozing when I walked out of the room, so that was easier than I expected.

Charles, the radiology tech, had told me it might be about 1-2 hours total, and when it had been over an hour, he called up to tell me there'd be a delay and so they were just getting started.  Then an hour later he called again and said they were only halfway through the scan, and Finn's IV had infiltrated again, so they were behind.  Finally, around 12:30-1 Charles called and said they were done, and that it wouldn't be long before they were bringing Finn upstairs.  From the tone in his voice, and the fact that he didn't give me that, "I'm not supposed to tell you this, but everything looks good" that radiology techs often do, I knew they'd found something.

My parents waited around with me for a while, but then I decided to send them off to my sister's.  I love my parents, but they aren't really who I want with me when I'm anticipating bad news; I decided I'd rather be alone.  I got the call sometime after 3pm from the ophthalmologist - there's a 1.4 x 1 cm tumor near the spine that is extending to the top of the lung (but not in the lung) and a few other weird tiny millimeter sized spots in the spleen and kidney.  Within an hour a transfer to the Children's Hospital (the smaller one, that's not a teaching hospital, for the locals out there) was arranged.

Right after I got the news I called my sister, who made plans to meet us at the hospital, and then I called LB who did the same.  Then I called Lisa, another good friend who works at my hospital, and she dropped everything to come be with me.  In the midst of all this, my office manager Michelle texted me to find out how we were, and when she heard the news she headed over to be with us, too.  Michelle and Lisa decided I probably shouldn't be driving (which, in retrospect was a good decision), so Michelle drove my car to the Children's Hospital, while Lisa followed behind.  They stayed with us in the room until Jamie got there, and helped keep Finn entertained and keep me calm.

LB showed up a while later with Diet Cokes, milkshakes and sandwiches, and just after she got here, the pediatric oncologist came in (it doesn't seem right, needing a pediatric oncologist).  Dr. B is wonderful.  She is very optimistic and upbeat - in infants, neuroblastoma has a very high cure rate, and she stressed to me that I need to be optimistic, too.  LB is an ob/gyn, so she took notes and asked all the questions that I couldn't think to ask right then, but would have wondered about later, and Jamie played with Finn and tried to listen in as much as she could while she talked.  I don't think I would have managed to make it through last night without them here.

There are tons of possibilities as to what we'll do to treat this, but first we have to know exactly how extensive it is.  He had blood work last night - of course it was right after he fell asleep that they came to get it, but after the trauma of all the IVs they wanted the best of the best to draw his blood, and she got it in one stick.  He's already had a chest x-ray this morning, he will have an ultrasound to look at those questionable things in his abdomen sometime today, and Monday they'll send out urine to test for hormones made by neuroblastoma tumors.  We're probably going to be staying here for the week while they do other tests - he'll be getting a test called an MIBG later this week; neuroblastoma tumors light up with an MIBG, so that should give us a lot of information, and he may also get a bone marrow biopsy at the same time.

Once we have all that information, we'll decide on what to do next.

Finn is currently getting his usual morning nap in, and I'm thinking that while he's asleep is a good time to have a good, hard cry.