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Tuesday, March 23, 2010


Today was absolutely beautiful in Memphis! 74 degrees and sunny....even 71 degrees at 8:30 pm! Avery had a day of appts followed by being admitted for round 3 of Chemo.
I have to admit, I did not have the greatest of days myself. For those of you that really know me....ok if you know me even a little, you know I prefer the organized, planned out way of life. In St Jude world...that does not exist. Expectations are rarely met when you want them to be and your day is never what it was supposed to be. They hand out these nice little schedules every morning when you get to the hospital. These are meant to be used as GUIDELINES...not schedules, even though they call them schedules. This means that your 11:15 am appt to see the Dr prior to being admitted could very well take place at 2:45pm and no one will apologize or even acknowledge that they are seeing you 3.5 hrs after they guideline said you would. Uh...hello, I have a baby that needs a nap, playtime, bottle, diaper change -- insert whatever mommy thing you need to do that isn't always easy when you are stuck in a waiting room. I've gotten used to waiting as it is usually due to sick kiddos bumping your place in line when they are sick. I of course want the same privileges when Avery gets sick so I can handle this one. What I am having a terrible time trying to figure out is why they Scheduled us for admission at 1 pm and then tell me to come back at 8 pm. If I'd known that, maybe I wouldn't have stayed up late packing for our in patient trip when I could have come home after our appts and done it! ARGG.....needless to say, I had a few choice words with our interim Nurse Practitioner (poor thing) and then a couple of "crazy mom" conversations with the night nurses on the floor once I got here. I think I have officially pegged myself as the crabby, crazy mom whose kid is still awake at 11 pm...and yes she is still awake right now.

Good news is Avery is getting much stronger a matter of fact, she is attempting to crawl out of her crib at this very moment. Great. And I think Front Tooth #4 is coming in finally. She now loves Lay's South Carolina Tangy BBQ chips....her first actual potato chip. She has accumulated some new skills as well. She can wave bye bye, clap her hands together, and throw a nice little tantrum. All of these she does at random, never when we want her to of course!

To top off our great day we add an oopsy mistake that has landed us back in ISOLATION. Yes, apparently at the end of February when they finally cleared us of all our infections and let us out of isolation (after 18 days) they made a mistake. A culture grew and showed that she still tested positive for the Adno virus. Yes this was a month ago. And yes we've been walking around possibly infecting other kids...ok not really, it's in her poo and she luckily doesn't play with her poo and share it with friends so we should be fine. But still. Back into isolation we go. ugh. It's been a rough day for mommy.

On the bright side, Scott Steffes will be here tomorrow evening to help us out. This will be a much needed distraction for the both of us! It is also Aunt Nikki's Birthday....So Happy Birthday Aunt Nikki! We love you! It's hard to believe that we are starting round 3 already. We are a third of the way there, only 4 more months till we are able to come home to Kansas City and see everyone. Boy we can't wait!

Love from a slightly wound up,


  1. Hey, Jenn and Avery!!

    I'm so glad to hear she's doing so well!! And I'm sorry you're having a bad day. :( You are such a strong person and an amazing mom!! Keep your head up and if you need anything, please let us know!! Give Avery a big hug for me!!


  2. Jennifer, Just yesterday I was thinking...I wonder when Jennifer will have a melt down and really post what she is dealing with. Voila!You are learning a hard lesson...patience....and to practice the Serinity Prayer..know the things you can change and control and be able to deal with and recognize the things you cannot control. St. Judes isn't run like other hospitals because of the acuity of the many children who have walked or been wheeled through their front doors. Pray for patience and understanding. Think of the poor nurses who are on the receiving end of frustrated parents and the nurses aren't to blame. Remember you are blessed to be getting treatment at St Judes even if it is 5 hours later than expected. That being said I can only begin to imagine your frustration and the hardships you have endured these many months.

  3. I so feel your frustration!I have a hard time waiting when the schedule says a time too.It's all normal and ok to voice your discouragement.If we acted like we were peachy all the time,we wouldnt be real.I have being learning patience since Megan's diagnosis.I will keep you and lil Avery in my prayes.My daughters love playing with her and we enjoy talking with you.Time goes by so fast at St Judes and I cant believe we are on round#4.Yall are just a month behind us.Hopefully you can get out of isolations soon.Megan was in there for a fever blister,silly I know,but the other children could get really sick.Thankfully there is a med that prevents them and hasnt had any more.Don't worry about the nurses,we all have are times when we confide in them and all of them understand totally that we are tired,frustated and stressed.We are dealing with our children who have cancer and anyone who is a doctor or nurse should understand we we have our meltdowns.Just remember to take everything to God in prayer.

  4. I am so glad to read a post from another Mom dealing with the same stuff in your same boat! No one can understand exactly what you are going thru except for other parents. I couldn't get enough of talking with them. I would ask the nurses to give other families my name and such for us to connect. What a life saver that was!!I still am friends with these people as of today. Good job in taking care of yourself are amazingly strong even if you don't think you are. And believe me, you are not the only crazy Mom voicing her happens all the time. That Avery is one lucky girl to have you as her Mom.