And the surgeon says...

... the surgery is a 'go' for Monday, the 26th! Thank you all for your prayers for her counts - Danika's platelets were at 98K on Wednesday, the 21st, so they'll surely be over 100 by Monday in time for the surgery. They'll check again on Friday to be sure (update: Friday's counts showed her platelets at 101). (This - Day 17 - would actually be the earliest or tied with one other round on the intermediate risk protocol, I believe, where she would have been 'ready' for another round of chemo, had we been scheduled for it. So, the unrelenting diarrhea (still!), very painful cramping and some scary 'out-of-nowhere' vomiting is truly the worst of side effects for this round. Good to know should they decide to try one more round of this irinotecan post-surgery. Plus, with the G/J tube in place, perhaps the meds might help to curb some of the side effects.)So, here is the 'plan'... (deep breath - this is a bit lengthy...)

~ The surgeon will remove as much of the main tumor as is safe for Danika. The updated CT scan does show a decrease in size, so that was good to see on the screen. I did not ask for size specifics. The location of the tumor (above her left kidney) proves problematic in that the vena cava (forgive me as I didn't ask to specify whether superior or inferior and without the medical wherewithall, I can't figure that one out on my own - although since this post on carepage, I did have a friend write and say that since the organ is below the heart it must be the inferior vena cava) and aorta are affected as well as the vein leading into the kidney. (They all look sort of 'squished' in the area along with the kidney, itself, when viewing the image on screen.) There is, of course, the potential for excessive bleeding.

~ The surgeon is unable to do anything about the metastases in her liver as they are too many 'spots' and too widespread. Basically he would need to remove her entire liver and clearly, this is not an option. He will, however, biopsy some of the diseased portions of her liver to see the status of what is there.~ He will remove the left adrenal gland (leaving the right will, at least, for now, keep her from needing lifelong medication). It is possible that she will lose her left kidney as well. He is not sure about that, but it is a possibility.

~ He may possibly place a temporary central line if needed (monitor central venous pressure, transfusion, etc.). He didn't say where - in the past during her stay in the PICU, it was placed in her groin.

~ The surgeon will also remove as many lymph nodes in the area as he feels necessary. They are removed and the area is 'capped off' so to speak by a titanium clip. (My bionic baby!!)~ Danika will also have the long-awaited G/J tube inserted (he is pretty certain he can do this). This will enable us to slowly taper the TPN (IV nutrients) and begin formula feeds again. TPN is not a long-term solution so we look forward to the day it is no longer necessary. She can then also receive whatever oral medication might be needed at any given time which we've not been able to administer since she so deftly and defiantly removed her ND tube back in August.

~ I've also requested a double-lumen mediport be inserted so that we can replace the leukapheresis catheter we use right now for her 'access'. Danika is a 'puller' (or 'grabber', take your pick!) and the two lumens (or 'tubes') hang externally from her chest so, naturally, she wants to pull on them. And when she's really mad, she yanks HARD sometimes (changing her clothes is quite the challenge!) and 'claws' at the dressing over her site. A mediport is under her skin... she can take a bath like a regular baby and splash in the water whereas with the leuk line, we can only sponge bathe her being careful to not wet the site and she HATES it. (Since this post on carepage, a lovely NB mom staying across the hall from us - mom to Logan - gave us some bath toys and bubble bath for Dani's birthday in anticipation of the day we can have some fun in the tub again!) The risk of infection, although still present, is less with a mediport. Once healed, dressing changes are not an issue - something else she hates! (Dressing changes are a weekly occurrence and necessary to keep the site sterile and keep infection away.) And, when the port is not 'accessed' (can be accessed with the same needle for up to a week) for chemo treatments, meds, fluids, etc., there is nothing external, so nothing to pull on! Fantastic!! Initially the leuk line she has will stay in, but her surgeon tells me the procedure to remove it is pretty unremarkable and can be done in Sloan's procedure room , vs. the OR, once she is recovered from the surgery.

During and after the surgery, Danika will be on a vent to secure her airway, and hopefully she will remain sedated for several days while recovering in the PICU. I actually laughed out loud when the surgeon said that. We'll see about that! I think to myself. Some of you may recall how NOT sedated she was for the better part of her 3 1/2 weeks in the PICU over the summer. However, I have lots of HOPE for a different experience for her - - after all, this is a very different and stronger Danika than the agitated and delirious baby of four months ago who was in tremendous pain from severe mucositis and also dealing with opsoclonus and simultaneously losing her sight - one who is well-adjusted (seemingly) to her loss of sight, treatments in general, and of course, loud noises (prevalent in the PICU at all hours of the day and night). I'm advised the recovery time could be 7 - 10 days, or even longer than that, depending, of course, on Danika. Not all of this recovery needs to be in the PICU, so once she's strong enough (and off the vent!), she can hopefully be moved back to Sloan. I've been pre-warned that she will most likely be 'puffy' from excess fluids. She'll have a tube in her chest as well as her bladder to assist with fluid control/drainage.

There is also the question of whether to have the anesthesiologist use an epidural to administer post-op pain medication. First, I'm told her platelet count should be above 150 for this - a number we rarely see without transfusion since her marrow is so crowded by the neuroblastoma, itself, and also from the damage from six rounds of chemo. There is the risk of bleeding and paralysis as with any procedure of that kind, however the pain management for her is the issue here and I understand she will be in a great deal of pain as this is a major abdominal surgery (remember your c-section, ladies? amplify it many, many times over!!). Certainly this would be more effective than the PCA (infusion pump regularly delivering meds, plus also activated by a button to administer pre-determined amount of 'rescue' pain meds) she'll be hooked to, but also more risky. Don and I will be in prayer and discussion about that this weekend just in case her counts are where they need to be and she is eligible.

Whew! Did you get all that? =) So, what do we do now? Well... we celebrate her 1st birthday for one! And what a miracle birthday it is! Then, we simply wait and pray for her to be as strong and ready for this surgery as possible. I am thankful we have a few more days to get her there. When the appt was over and I asked the surgical NP if there was anything else I should know or do, she simply replied that I should enjoy the weekend with Danika as much as possible. So, I plan on doing just that. Plain and simple. I'm going to enjoy being with my little girl. I pray all of you reading this also take time to truly drink in and enjoy whatever time you are blessed to spend with those you love - especially your children. Truly - What a gift each and every day and moment is! Savor them like crazy!!

With HOPE from Team Stanchi