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Monday, July 30, 2012

Window World

Just in time...

Jeremy and I recently called upon Window World here in Kansas City to help us replace our 1977 windows and hopefully save us a little money in energy costs.  They are coming this weekend to replace them and let me tell you -- after the $502 electric bill we just got -- it's just in the knick of time.

Window World is a huge supporter of St Jude and the reason we solicited them for replacing our windows.  In the last few years they have contributed over 2 million dollars to the children of St Jude and we are very honored to have them work on our house.  When they discovered that Avery was a patient at St Jude they decided they wanted to make the day of work and extra special one.  They have asked for volunteers from the company to work on Saturday to replace our windows and are bringing with a tent and all the fixings for a little BBQ.

So if you have some time on Saturday and are curious, stop by for a few minutes and have a hotdog, say hi to Avery and ask a question or 2 about windows...great opportunity to see how things are done in case you are contemplating new windows at all.  It's of course supposed to be 98 degrees outside on Saturday, so dress appropriately as we'll be outside!  The crew will be here in the morning, attempting to wrap up around 1pm so swing by for a few minutes in between 11:00 and 1:00!

And just in case Jeremy and I were hesitant on dumping our old windows...the electricity went out last night at 2 am -- gotta love that heat!


Thursday, July 26, 2012

We apologize for the delay in updates. The Internet wasn't working on Tuesday night for some reason. Scan results weren't exactly what we were hoping for but they could have been worse. There are 3 areas of concern that the Drs would like to watch more closely. As a result, they would like to rescan her in 4 weeks rather than 3 months. Beacause Avery has had prior radiation in her tumor bed, they are concerned with the possibility of tissue necrosis on top of new cells and tumors. We are in fairly new territory for all of them and the bottom line is that they just can't tell what every little blip may be on her scans. Full cranial radiation after proton radiation to the area is not common and we know it comes with more questions than answers. Our hope is that these small changes in her imaging are simple radiation weirdness and that we'll watch them just to be safe. In reality, we know that they could be so much more. Time is the only thing that will give those answers to again we wait and see. Obviously 4 weeks from now I won't be able to travel so Avery and Jeremy will fly down to Memphis for the scans and hopefully come back that same day. Results take a day to be read so we'll discuss them with our Drs the following day. The next 4 weeks are going to drag and be full of anxiety for us. I am not looking forward to the heavy feeling that comes with this type of dread. I honestly hope that none of you ever have to live through the torture that a cancer parent experiences on a constant basis. There are times in which I don't know how we survive it. On a high note, nothing like ending the trip in style...Jeremy went to the minute clinic this morning and discovered he has Strep Throat. Seriously!? Like an immuno compromised cancer kid and a 33 week preggers lady need that! Needless to say he has been banished to the basement and guest room. Thank God Nana is coming to take care of us this weekend. Jenn

Tuesday, July 24, 2012

Quick Update

Hi, everyone, Nikki again...Jenn lost Internet access tonight and hasn't been able to update as planned. We know many, many people have been waiting all day to hear some news and didn't want you all to worry. So, I'll keep this short and sweet and let Jenn provide the details when they get home. The scans results weren't as great as we'd all prayed they would be but it wasn't terrible news either. Basically, there are a few areas of concern that the doctors want to keep a close eye on. One is the remaining tumor and the others are too small to know what they even are at this point. They will do another MRI in a month to check for any changes. The great news was her spine and CSF were clear! They're all exhausted but thankful for your prayers and promise to give a full report in a couple days.

Sunday, July 22, 2012

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!!


Sunday, July 15, 2012

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.

Tuesday, July 10, 2012

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