While scanxiety had definitely set in for us over the course of the last few weeks, I don't think it had truly hit until we were back in the MRI waiting room on Tuesday and I started to panic over the "what if" situations that began running through my head. The last time we were in that MRI waiting room, the nurse practitioner came out - way too early. And we just knew. I quietly cried as she attempted to pretend like she knew nothing during the walk down the hall. We entered the room to find our Dr waiting - a grim expression on his face. And then I really lost it. This time it was tumors. Not just cells. Bulky tumors, and lots of them. So while we have had a good few months with the new chemo and the actual radiation treatments, I knew that we could so very well be having the same conversations, only this time there would be no tricks up our sleeves, no back pockets last ditch option. This time....Well lets just say I had every reason to be having a panic attack on Tuesday.
Luckily, I was able to keep distracted for a majority of the wait by another parent. She was also waiting for her son to finish scans, only they were waiting for their 6 month scan results. When Avery was first diagnosed, we stalked this family that had taken their 7 month old baby boy to St Jude from Kansas City. It was because of a late night conversation with this mom that we decided without a doubt where we had to go. Her faith in the dr's and staff at St Jude's was unwavering, and 2 1/2 years later it still hasn't faltered. Her son, now 5 is thriving post treatment and we hope to be able to continue to rely on them for guidance as the years go by. The connection that parents automatically create with other cancer parents is something so amazingly undefinable and strong. No one will ever get what we are experiencing like they do. No one will ever truly understand the feeling of fear, guilt, and helplessness that a cancer parent feels than one that has been through it. Cancer is awful, but cancer in your child is unforgiving, relentless, and unfathomable. Imagine watching your child be attacked by a monster every day, in terrible ways while you stand by and pour rubbing alcohol on their cuts....That is what we live through each day. Having someone that has been there...done that, be that rock and sounding board you desperately need and know that they have already had to do those things as well gives you comfort. Plus, lets be honest. I get pretty annoyed when things don't go the way I want them to and this woman, like most of us cancer moms, is the same way. That helps me feel better about myself, especially now when my hormones are making me more than normal crazy.
After scans we had a slight problem with Avery's O2 stats and we had to spend some time on oxygen until her levels came up. A chest X Ray was ordered, but nothing really showed up so they forced oxygen in her face for 2 hours before they released us. We talked to Avery's Dr before leaving but were told the results from the Brain MRI and LP were not done. That meant waiting for morning to get the results. The good news was that the Spine MRI showed less enhancing than prior and there was no obvious tumor growth.
Wednesday I finally got a call from the Dr and he indicated that the LP was clear - no cells in her CSF! The MRI of her brain looked similar to the spine, no obvious growth or new areas of concern. The hard part with this radiation piece is that it can continue working up to 6 months after treatment. We are only 6 weeks off treatment. The impression given is that they saw what they expected to see after 6 weeks and are not concerned with anything at this point. We will scan again at the end of July.
So for now we slip back into our state of naivete and pretend like we have a semi normal life until something rocks the boat, or July hits and scanxiety creeps back in. Avery's energy level is somewhat diminished still and we are hoping that it will start to come back up with her counts. She has her spurts of energy, but overall she tuckers out pretty quickly. A few more days on her antibiotic for her UTI and hopefully we will have kicked that as well.
Monday we go in for our 20 week ultrasound with the Perinatologist. At this appointment we will decide whether or not we want to do the Amnio to check for any chromosome issues. We opted not to last time as they didn't see anything that warranted being stuck with a 4 foot needle. However, this time the baby will be bigger and items that were not as easily seen at 16 weeks may be more apparent at 20 weeks. Should there by any maybes I'll be getting stuck with the big one. I started feeling kicks this past week - mostly at night, mostly in the bladder - but obvious shouts that someone is in there. Exciting and comforting, while annoying at the same time. Avery is still not very interested in the concept of the baby. She likes babies and spends any time around them shoving pacifiers into mouths and bossing the mommies around about what the baby needs, but for some reason is indifferent to her own baby brother. She does however find her "baby Emmett" t shirts very exciting - these are of course the "BIG SISTER" shirts I got for her that she calls Baby Emmett t shirts. Once he is here, I'm sure she'll be in love - but for now, not so much.
As always, we are so grateful for all of your prayers and support. Without the team we are surrounded by I am certain Jeremy and I would not have made it this far. As her Dr noted this last time, we've been going going going for 2 years...it's time for a little breather. We couldn't have done what we've done these past 30 months without the love and support, help and sacrifices that many of you have given. Jeremy and I will always be indebted to all of those that have stood by us. Please pray that this radiation continues to kill those cells. That it finds each and every one of those little bastards in every crevice imaginable and destroys them. And that Avery can continue fighting this monster for however long it takes to kiss it goodbye.