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.
Monday, April 23, 2012
Avery had surgery this morning on her mouth. Luckily she came out with all her teeth she went in with. We added 4 crowns and 3 fillings but nothing was pulled. She came out with Angelina Jolie lips...she refused to let me take a picture of them but they were pretty comical. She's a little out of it now, hopefully a few more hours and some numbness wearing off will change that. Her MRI/LP is tomorrow late morning. We are hoping to get results late afternoon. Following that we will be hopping in the car for the long ride home. Quick trip, long drive. Jenn
Posted by Jeremy, Jenn and Avery at 4:27 PM
Monday, April 16, 2012
Avery has had a rather rough week this last week. Starting Monday she began to display some concerning behaviors which put us into a tizzy of sorts. Her energy level seems to have tanked entirely and we find her less and less engaged in playing. It could be effects of radiation and her low counts, although there doesn't seem to be any way to truly confirm it. On top of feeling tired, her allergies have kicked in high gear and she is clogged with mucus. Of course a 3 year old can't blow her nose, so she spends all day snoring. We took her in for labs on Wednesday and she hasn't improved since we left Memphis. Her platelets are still in the 50's and her ANC has dropped down to 1100. Her marrow has taken hit after hit after hit....so understandably its taking a long time to recoup. We are nervous her ANC will not be high enough for the dental work she desperately needs done next week. I guess we'll wait and see...
We leave next Sunday for Memphis. It's hard to believe its been 5 weeks already. Besides dental work, she has appointments with the Endocrine docs to check on her levels, and ABR for her hearing check, and of course the dreaded MRI/LP to see if this radiation has done its job. I have to say the end of this month is being dreaded as the anxiety builds for her MRI and then the following week we go in to the Perinatologist to check on the baby. The fear that goes along with both situations is about all we can take. Top on the fact that Avery is not acting "herself" and you've got a highly edgy mom. Apologies in advance for short answers, no replies and "are you effing kidding me?" looks.
On the bright side, Jersey has succumbed to the idea that tolerating hugs from Avery inevitably gets her more attention from mom and dad and she has apparently decided it is worth it. Score for Avery.
Posted by Jeremy, Jenn and Avery at 6:53 AM
Sunday, April 1, 2012
Avery has been doing well this week. Her counts were stable, which really means her bone marrow is keeping up rather than shutting down. We are hoping to see some improvement this week when we check labs. Her platelets are a lot lower than I would prefer, especially with a toddler that has balance issues. She has been spending the week with her buddy Chance and the puppies. She is really smitten with Grandma Marlene's puppys as they are too dumb to run from her and let her hug and squeeze on them. We may be trading Jersey in for one of them...
On Thursday last week Avery flew to NYC with Jeremy to take part in a photo shoot with St Jude and Marlo Thomas. It was very exciting - however this 3 year old decided she didn't feel like smiling during the session so we'll see how many pictures she actually makes it in. They will use the photos during the last few months of the year when they run the "Thanks & Giving" campaign in the retail stores. The campaign asks you to give thanks for the healthy kids in your life and give to those that aren't. If you haven't noticed it in the past, keep an eye out for the purple glasses near the registers in November and December. I'll remind you - no worries.
Avery seems to be keeping her energy up for the most part. She is loving the outside right now and thankfully its been in the 70's and 80's the last 2 weeks and we've been able to spend a lot of time outside. She loves sitting on the front step and using her chalk. Great temps right now make me leery for the summer. I'm going to be huge and miserable already -- and I am pretty sure we are going to pay for the mild winter and beautiful spring with 150 degree summer -- I just know it. If anyone recalls my ankles and knees when I was pregnant with Avery, this is not going to be pretty.
It feels like we just got home and we are so relieved to be here, but in 3 short weeks we'll be returning Memphis for the dreaded first scans post radiation. We pray that the radiation has gone in and cleaned house on all these nasty cells and tumors, but we know what the reality is. We have a 50/50 shot of this working and we've risked it all to win that bet. Every day it feels like Avery learns something new... and every day we know what this radiation is taking away from her. Its a fine line that Jeremy and I walk each day. We rock back and forth on feelings of relief, guilt, exhaustion and gratefulness. What this cure will bring is devastating but in the same breath it will bring us her. So we hold on tight to knowing that we did everything we could and that come what may - we will do our best to make her life the most fulfilling life it was meant to be.
Here's to Avery being a Big Sister again!!
Posted by Jeremy, Jenn and Avery at 7:29 PM