4 Month Post Radiation Scan

Jeremy left for Memphis about an hour ago.  The dogs have been farmed out to various friends for the next few days.  Avery is taken a much needed nap after waking up at 5:30 am.  As I finish up the last few things before we get ready to head to the airport I find myself starting to panic...


Avery is scheduled for an MRI tomorrow morning, followed by her LP.  The afternoon will be spent in recovery and then an appointment with her Dentist and Eye Dr.  We'll see how well we've been brushing and if her vision has worsened.  Tuesday we have a long morning of Cognitive Neuro Testing, a visit with her PT Therapist to see how her braces and walker are holding up and then we meet with her Dr for the results of the MRI and LP.  We'll post on facebook about mid afternoon and on here in the evening.  Wednesday is a mix of therapy visits and an Endocrinology follow up.  They will be crucial moving forward as the radiation has huge damaging effects on her growth hormones and thyroid. 


Wednesday evening Avery and I will fly home pretty late, hopefully Jeremy will be home in time to pick us up from the airport.  We'll probably send him home around noon.  So far we haven't had any further complaints from Avery and her UTI - hoping we may have fixed things. 


Please pray that we seem some shrinkage in the remaining tumors...Hell at this point lets just pray that they are gone all together.  They say the radiation can continue "doing it's thing"  for up to 6 months, sometimes even up to 9 months and we are at 4 months, but lets just go with the gone option as I think she deserves it.  It's easy to forget that the world we live in is still not safe from those awful results.  Especially when we've adjusted our lives to some sort of (albeit abnormal) routine.  A birthday party yesterday and an MRI tomorrow.  Just doesn't seem fair...

Big Time Prayers Needed This Week!!

Jenn

UTI #5

Well never fails...a weekend comes...and so does a trip to the Urgent Care.  Avery was on an antibiotic to clear up the last UTI she had and we kept her on it after the first 10 days were done at a really low dose.  That finished out on Wednesday and on Friday evening she started to complain about her Pee Pee hurting again.  We met with her Urologist on July 5th and he put her on a bladder spasm drug.  She has been on  that med for the last week.  Obviously bladder spasms are not the issue.  So back on the antibiotic we went today.  Poor kid is so sick of this cycle and so are we.  The antibiotic makes her not want to eat and we have to keep her on Zolfran to get anything down her.  She's lost a few pounds in the last 2 months and while she isn't too skinny, she surely can't afford to lose any more, especially now that she is growing.

She was just getting her spunk and attitude back and we were hoping to see a jump in her ANC.  She is bruised from head to toe and now her poor immune system is fighting another infection.  I swear its a never ending circle.  On a high note, we took her to an Urgent Care this am, got a UA done in the first 15 mins, an antibiotic prescribed 5 mins later and we were out the door within 45 mins of our arrival.  Now we'll have to wait and see what grows out of the UA specifically and see what Urologist wants to do moving forward.

Gearing up for a hot week this week which is miserable for all of us, especially Avery.  She doesn't seem to do very well with the heat and humidity so we try to keep her in the air conditioning all day.  I can say my tootsies and big belly are not looking forward to it either.  I can't even imagine how Jeremy and his coworkers do it all day long.  Good luck staying cool this week!

We'll keep you posted on the PEE PEE Front when we know more.

Less than 2 weeks

Its hard to believe that another 3 months have almost come and gone but here we are approaching our 3rd scan post radiation. Avery and I will fly out next weekend and meet Jeremy in Memphis for 3 long days of sedations and tests. She will have the normal MRI and LP done, along with vision assessments, therapy appointments, a hearing test, endocrine work up, and check ins with all of our Drs. I don't think we are as nervous about this one as we have been in the past...but come October we'll be wrecks for sure. We've been attempting to enjoy the summer, but this 100 degree heat really takes a toll on pregnant women and kids with cancer. My weight just keeps inching up with the thermometer and I'm pretty sure Emmett is going to come out 10 lbs. Avery has been really enjoying her pool time this summer and we are so grateful she can actually go swimming! She continues to attend Aquatic Therapy each week, as well as going to full day rehabilitation services 2 days a week. The rest of the week she spends bossing around her buddy Chance and chasing the dogs. Jeremy threw himself a birthday party this past weekend and as a result we got to spend some time with a bunch of friends we haven't seen in a while. It was great to catch up and pretend, even just a little that our lives are getting back on track, albeit a new one. We are looking forward to clear/stable scans and good reports from St Jude in 2 weeks and will post as soon as we have them. For those of you on Facebook, check out the St Jude Research Hospital Page and you'll see Avery is pictured with a dog. Don't want to brag but she had more "likes" after 2 hours than Bill Clinton's photo...apparently bald kids and dogs pull more "awe..." than former presidents! She is also on the St Jude website on the gift shop page. Both are adorable of course! Thank you to everyone for your continued prayers and support...keep those prayers coming as we approach this next set of scans. Jenn