Wow... What a 24 hours its been. This time yesterday we struggled to say goodbye to Desi when her OR team rolled her bed through the double doors that we could not go past. They pointed out which room they would be in and I swear after they passed through those doors, every bone in my body wanted to sneak in and just stay posted outside her surgery room. That thought brought me comfort. But Dad insisted I go to the first floor waiting area to join some of our family who were already there, so I waited until those automatic double doors closed and then waited some more... All I wanted to do was be NEAR her, even if I couldnt see her. The first couple hours until our first update was the hardest. At that point I was pretty much eating my lip and trying to zone in on something to funnel all of these racing thoughts to. When Maureen (the nurse liaison) came to us at almost 2 hours past (9:30 am our time) right on the dot, to tell us that shes doing great, she was stable and that the anesthesia team takes a while to get started but that surgery has begun already, we all took our breaths. Then we began the countdown until the next update. Even though I had a million questions I wanted to bombard her with, we knew that these simple yet reassuring, short updates were all we were getting today. That was frustrating. I honestly wanted a two-way with them and just wanted to listen in on what was going on in there, where they were at, how here left kidney was looking, hear the conversations they were having in there. I promised I wouldnt have said anything... Just wouldve listened. We did meet with most of the team that would be in the OR with her and we again brought up the MRI and the final still wasnt in. So no definitive answers on that issue yet. But Dr. L did say he looked at the scans and he didnt see anything but if indeed the findings indicate otherwise, it would be a separate surgery as a neurosurgeon would be performing the surgery and also entering from a different incision then where he is going through. So, this of course is on our minds as well. Dr. L expressed his concern and told us that she could lose her left kidney as its right there where her tumor is and hearing those words felt like someone sucked the air from my lungs. We were already prepared that she was losing her left adrenal gland. We were as okay as we could be with that. We certainly did not want her to lose ANY other organs. He assured us he was going to do his best to save it and he felt confident that he could do that. We had no choice but to leave this too, in Gods hands. All of this madness is out of our control, out of the realm of what is comprehensible and that is a feeling I have yet to come to terms with. I was a zombie at that point as I had only 1 hour of sleep on me. I needed food and I needed sleep so bad. I was lightheaded and felt sick to my stomach. I would doze off and wake up startled, feeling like I missed something and wanting to know how much time had passed. But it was never much at all. Next update came and it was basically the same as the first one. Shes doing great and shes stable. Wed have to do with those every couple hours for the next 8 hrs. Finally during one of the last updates, we told her to ask about her left kidney. Were they able to save it?! The next time she came back, she began her usual spiel and I blurted out, what about her kidney?!! She said oh yes Im sorry I almost forgot about that, doctor was able to save it! It sounded like a cheering section over in our area, complete with shouts, woo hoos and high fives!!! Next update said the surgery was finished and they would begin closing her up, which would take 1 1/2 - 2 hours... At THAT point, you could feel the tension and stress levels melt away. We all felt lighter. We all could breath so much easier. And we were all so anxious to see her. I asked Terry to go track down that MRI report so on his way, he had run into Dr. L in the hallway, he was on his way up to the 9th floor to check in on an emergency but he told Terry that the surgery went good and shook his hand. Terry told him he trusts him and Dr. L said pointed up and said that he trusts God. We were told the next call would be to the consultation room to talk to the doctor to go over the surgery and then we could see her. But the next thing we know is that its 4 pm and PICU called to say shes waking up and shes looking around for us and shes upset, so we were a little thrown. Desi has NEVER ever woken up to one of us not being there. Shit, Id be pissed off too! We race over to the PICU and sure enough shes awake, shes pissed and shes coming out of all the anesthesia fog. She was not a happy camper. Shes yelling Im thirsty! I have to pee! All while shes trying to turn from side to side and move around not realizing what she just woke up out of and that shes in a world of pain and must feel so confused. So I tell her that she can go pee, she has a tube in her that will drain her pee for her and it wont get her or her bed wet. She was okay with that and off she peed. I knew they wouldnt give her anything to drink nor any ice chips at that point but they did give her a little sponge on a stuck with some water absorbed in it that she could suck on to keep her mouth and lips moist. She grabbed it and chewed on it, asking for it to he dipped in more water for her. Nurse explained they did not have to place an additional central line and that one of the ivs on her hands, was an arterial line and was monitoring her blood pressure. We were AMAZED that she was awake. I definitely expected a lot worse. She wasnt even as puffy as I thought she would be. We were soo happy and relieved to see that she wasnt intubated, on a breathing machine and awake, even though she was starting to feel the pain. Even her nurse said they were surprised. She told us that most every child comes up to them in the description we were told to expect to see her in. Not only that but she didnt even have an oxygen mask on! They had a tube with blow oxygen right by her pillow and she was breathing at 98% room oxygen on her own. It was amazing! We were in shock still amazed by what we were seeing... and although we were amazed to see her doing so well, at the same time it didnt surprise us. Desi has been doing this for the last 4 1/2 months. Never ceasing to amaze us and always defying every odd up against her. She is just a miraculous little girl. She was starting to feel the pain and you could see it in her face, she was in a lot of pain, her face said it all. She was on a morphine pump so we began pressing the button to see how long the relief would last. Just about every 15 minutes, on the dot, she was crying or wincing in pain, sometimes before the 15-minute mark. It would continue this way until her first dosage increase that evening. She was now breathing 100% room oxygen so they turned the oxygen tube off. We did peek at her incision and yes its bigger than what we had hoped for but it is very clean and looks great. At some point, Dr. L did come in to talk to us about her surgery, he walked in with a sport coat in hand, wearing his scrubs and apologized for not coming in sooner but he had that emergency he dealt with and then he had a conference call with the commissioner of the Cancer dept. We did bring up the MRI again but still no final... He said that he removed the ENTIRE tumor and EVERYTHING he could see to the naked eye, he said there would be microscopic cells left but that no one can remove all of those and that the job of all this other aggressive treatment she gets, is to take care of those microscopic cells we cannot see. He said that most of her tumor looked dead and even though it hadnt grown into other organs, it was COMPLETELY encased in nearly every blood vessel that led to her organs. Her aorta and vena cava too. Being mostly necrotic (dead), made for a much simpler removal of peeling it away from all these areas. He again went over that he removed her left adrenal gland, several diseased lymph nodes and he did a liver biopsy. Everything gets sent off to pathology and we should get all those results back in a week. Terry told Dr. L thank you, thank you so much and he just pointed up to God. Then he was off to a fundraiser. What an incredible human being this man is. He is very quiet and very humble. He tells you straight up and sugar coats NOTHING. Youve got to appreciate that brutal honesty. So the remainder of the night went as expected... A lot of pain. A lot of button presses. A lot of ice chips. A lot more fluids & meds. She is a little bit more puffy today and certainly more quiet. Desis never been a complainer and she sure as shit isnt starting now. I dont know of a child that DOESNT complain and I always have to remind this girl that its OKAY to cry when shes not feeling well, its okay to cry when shes hurt or in pain, its okay and absolutely normal to let those cries out and she will briefly after she hears that but then she goes right back to holding her pain in. We have become experts at reading her emotions from her face and especially when were in the hospital and she on monitors, correlating those numbers with her pain and discomfort. Its 11:30 am (our time) and shes been up since before 7 am. Shes still my beautiful girl but she is looking more puffy today. Shes much more uncomfortable, in so much more pain and not speaking at all. She barely even makes any noise when she cries, you can just see the tears welled up in her eyes and then rolling down her cheeks. It hurts to see her like this but now we KNOW that this tumor is FINALLY out of her body and were fully aware of how successful her surgery went. The only thing she wants is ice chips and she can barely make out the word ice. Shes not talking at all and hardly moving. Anesthesiologist, NP, Dr. L and the rest of the team have all been in and the goal today sounds unrealistic but its to get her up and out of bed (no way in hell shes going for that!) in her chair, moving around (which I know is good for her and good for waking everything up), begin physical therapy and breathing exercises to work on her lungs. The goal is to remove her chest tube today (theyre thinking tonight as long as the fluid output continues to be minimal), remove the arterial line today and maybe even getting her to take some sips of fluids. Sounds like they have some incredible goals around here. If it were me, Id say let my baby rest and keep her pain controlled, but thats why Im not a doctor and I could never be one. We trust they know what theyre doing and even though Desirae will be fighting to do some of these things, we understand its whats best for her so we will help her and be right here for her. They will begin a 12-24 urine collection for markers this evening that is for her VMA & HVA levels which are unique to reading certain protein levels in her urine for the particular tumor (NB) she has that was just removed. These were never a factor for her as these numbers were not elevated at all prior to diagnosis which is why they kind of ruled out Neuroblastoma and were more thinking another type of cancer (Lymphoma, Wilms tumor) prior to the tumor & bone marrow biopsies and MIBG scan. MHeck even after the preliminary came back on the biopsies, they STILL were not completely convinced it was Neuroblastoma. At any rate, once that test is completed, they will remove her catheter. Dr. L just came in and one of the members on his team commented on how quiet she is and Dr. L knew what I already know and said how tough she is and that shes a bull and rubbed her head and said boy, for being a bull, you sure are cute! Of course this got no response, not a grunt, a groan, a lip movement or even a eye gaze towards them. She just wanted the volume turned back up on Sofia the First! He reiterated that today were getting her out of bed, walking a bit and sitting in her chair, chest tube out hopefully this evening, urine collection to start this evening and best news yet.... We get to move OUT of PICU and onto the regular Peds floor. That really tells me how great shes doing! I know yesterday Desi was in the hearts and prayers of thousands of you and for EVERY single one of you who prayed for our daughter, for her surgeon, for her OR team and for us, God Bless You. THANK YOU from the bottom of our hearts, from the depths of our souls, from all of our being... We KNOW God was with her in that operating room all day yesterday. We know he was guiding the hands of Dr. L. We know he was with her anesthesiologists and the other nurses and doctors in there. We KNOW that God performed a miracle on her. We are forever grateful for every single word in every text, message and post that poured out to us ALL day yesterday. Luckily, we were in the presence of some of our families and even wonderful friends who are just like family throughout it all yesterday. When I tell you that we could not have made it through the day yesterday without ALL the support, prayers and love from everybody, we MEAN every word of that. Now were on the road to this recovery and soon shell be getting what he PRAY to be her very last round of chemo indefinitely. After that, we need to get home immediately before her counts start to drop and spend every bit of the 3 weeks home we get, in the comfort of our home in the wonderful Coachella Valley that we have missed so VERY much!
Posted on: Fri, 22 Aug 2014 15:13:26 +0000
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