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Wednesday, March 30, 2011

Tuesday, March 29, 2011

Quiet Week

As we prepare for our upcoming trips, our week has been very quiet...exactly how we like it. Avery has recouped her energy, her appetite and her counts. This is great for us and we look forward to more things coming back. Her eyelashes are just starting to sprout and we can't wait for the hair on her head to start coming back in. We worked hard on her new big girl room this past week and we accomplished a lot. We moved our bed into her room and left off box spring so she has a low level, big girl bed. She LOVES this. She hasn't slept in it yet, as we are missing the railings to keep her from falling out, but she loves to climb up in it and play. We are looking forward to returning from NY and letting her sleep in there like a big girl.

We leave on Sunday morning for St Jude and will spend the entire week there. Her MRI is on Monday, but the LP is on Tuesday along with her hearing test. Wednesday and Thursday appear to be open now that we have moved the Flow Study to Sloan Kettering. Friday morning she will go in to Lebonheur Children's Hospital to have Dr Boop insert the programmable piece into her shunt in her head. We believe this is a fairly simple procedure, but nevertheless we will have to stay the night and not be able to drive home until Saturday afternoon. Sunday will be a huge unpack and repack day for us as our flight leaves for NY at 7 am on Monday morning.

We are excited and anxious all the easily this trip to St Jude could turn out differently than we are hoping and that is a very heavy weight on our hearts. We can't seem to envision a life any different than the one we lead now so we are taking that as a sign that for once, things may go as planned. That being said, now is not the time to cut back on the prayers people. Please pray that our results at St Jude are good and that the surgery on Friday is short and sweet with an easy recovery and very little pain. Please pray that the amazing work they are doing at Memorial Sloan Kettering is the answer to all of the prayers we all have spent the last 15 months sending up to the powers that be. And lastly, please pray for the miracle that this tough little girl certainly deserves.


Thursday, March 24, 2011

Breaking Free

Change of plans....apparently the Dr's have decided Avery is stable enough to go home. No complaints here by any means, but definitely a little surprised. She has a week of antibiotics to finish up for this mystery infection that has yet to rear its ugly head in her cultures. This is easy enough to accomplish as we did this last round after her tooth infection. It requires some in opportune times of administration (for instance 1 am is the next dose) but it is manageable.

It will be nice to get home and spend some time with Nana and GJ. And we know the most important thing, Jersey Anne, is missing her buddy right now. I found a sweatshirt for Jersey the other day that is that aqua blue of Avery's glasses and it has white Skull & Crossbones on it. Jersey is going to be so ticked when I put it on her -- but man how can you pass that up? I'll take a picture -- you all will enjoy it.

Jenn & Jeremy

Wednesday, March 23, 2011


Avery spent yesterday in the PICU. She ended up going into Septic Shock on Monday night due to the infection and they had to put her in the PICU so they could administer the right drugs and watch her very closely.

Scary doesn't even begin to describe the night we had. Right after I finished blogging, Avery spiked a fever again and the team on the Oncology floor decided to call the Rapid Response team. This is a team of dr's and nurses and staff from all over the hospital that come to you immediately to assess the situation and help make decisions. This meant 20 people came flying into the room as Avery went down hill. It was a circus. And scary - but we were surprisingly calm. The resident from Oncology kept asking us if we were ok. How can you freak out when you really aren't sure what is for the time being we were fine. We watched as they assessed and shoved giant amounts of fluid into her little body, one enormous syringe at a time. Finally they decided to take her and we were moved to ICU where another team of Dr's continued to work on her. This continued on until almost 6 am when they finally managed to calm her down and she fell asleep. Avery's body went into septic shock, which means the infection in her body was not able to be fought by her body because her counts are at 0 and she has no fighters in her body to fight infection. Once this happens, Avery's blood thickens making it harder for her heart to pump blood to all of the vital organs. As a result, these systems start to shut down. THIS IS NOT GOOD. So for all of the times we've made you wash your hands and avoid a visit -- this is why. Jeremy and I dozed in a chair for an hour or so before the morning rounds began and then we met with each of the teams to find out the plan for day.

Avery slowly recovered Tuesday morning. As she slept, her BP came up and her heart rate went down. Oxygen levels became more consistent and they weaned her off the Dopamine. By 4 pm they decided it was safe to move her back to 4 Henson. We have never been happier to go. The PICU is a scary place - quiet, private, restricted, controlled. The crazy halls of Henson are much more welcoming even if we have to spend our time attempting to get out of Isolation - when we aren't supposed to be in it.

Today was a mellow day. She has very little energy and her appetite is gone. She will however, eat Reeses Pieces out of Nana's pocket at any point in time. So whatever -- a diet of chia tea and reeses pieces it is. She took a 3 1/2 hour nap that I am certainly going to pay for tonight, but you really can't justify waking up a kid that just spent the day in the ICU with a life threatening issue. So sleep may not be in my future tonight. Oh well, there will be plenty of time for that later on.

The positive to this week of scariness is that we got to see both Grandma Lippold, Nana and GJ. It was very exciting to be able to see them all before we go on our trip to New York. Thank you to all of you that sent prayers yesterday -- it was much needed and it worked. Please keep her in your prayers as we move forward through the weekend and pray that her counts come up and we have a fairly uneventful next week and a half. April 3rd we leave for Memphis and April 11th we leave for New York. Both bring us anxiety and hope, but mostly they bring us closer to the miracle we are so desperately praying for. A rough week for us as a family, but we keep in mind that it could be worse, and we saw a glimpse of that as we walked through the PICU unit yesterday. Once again, we urge you to appreciate what you have and be thankful for each day you have with the ones you love.

Jenn & Jeremy

Tuesday, March 22, 2011

A Mother Just Knows....

Well -- it's 2:35 am right now and yes...we are back in the hospital with a fever...

Not to say we are surprised, cause really we aren't -- I mean we didn't say our goodbyes when we left last week -- kinda figured we'd end up here before the month was over. We took Avery in for blood yesterday. She was low and whiney and we decided spending a Sunday together as a family at the hospital beats just me and her going on Monday. After filling up her tanks and leaving at 7:30 pm on one of the nicest days yet - we took her home and noticed her favoring a certain part of her body that most of us are pretty hard on. Her BUM is broken people. So this morning I called the pediatrician, concerned we may have hemorrhoids...and took her in. We discovered she had instead, a rather large tear in her pooper. How awful this must feel I am be constipated, nauseous, weak and broken tooshie all at the same time...I mean really at this point the only thing that could make it worse is a tooth coming in....ok maybe there are a few other things that could make it worse but you get my point. She is in agonizing pain and there's not a thing we can really do about it. They gave us some litacain - numbing cream to put on it, but the effects are short lived and we can only do it three times a day.

I told both Nikki and Jeremy that we would be in here by the end of the week for sure and look at that - 6 hours later that's exactly where we are. How can you not expect to get a fever when you have a hole in your hiney, right next to the most bacteria infected place...other than your mouth? It was inevitable. So be it...

Fever spiked pretty high and they put her on tylenol for that, 3 antibiotics to cover their bases entirely, and then they loaded her up with the good stuff - Morphine to get rid of the pain in her ass....literally. Right now we have a slew of nurses and residents trapesing through her room as they attempt to readjust the "blow by" in front of her face. She hates this thing and twists her head every time they reposition. At some point they are going to put the cannula in and she hates that even more. Understandably as crap up your nose isn't always pleasant. Her oxygen saturation is low and her blood pressure is as well so they are pumping her full of fluids and monitoring her closely. She just wants to be left alone and I can't blame her. We are in for a long night for sure, but we'll get through it - especially with the good drugs...

They just informed me that they may move her to the PICU. Apparently the fluids they have given aren't helping her blood pressure and they may need to try new meds to bring that up - all of which would require the PICU... We'll see.

Please pray for an upturn in events and fast healing in her bottom -


Wednesday, March 16, 2011

Pieces Falling into Place...

The week has been a good one. Avery has felt great all week and has had a ton of energy. This has aided tremendously in her strength training and we've found her extremely interested in walking and climbing and bending and twisting. It's so great to see her have that energy after 6 rounds of high dose chemo. She is especially excited about this warmer weather we have so that she can get outside in her cool walker and stroll about the neighborhood.

I have been in contact with the Dr's at St Jude and Memorial Sloan Kettering and it appears we are closer to a date for our NY trip. At this point we plan to spend the week of April 4th in Memphis getting our diagnostic tests again, as well as a flow study for her CSF (spinal fluid) and brain surgery for an addition to her shunt for the study. All in all we should be able to come back by Friday of that week - but I suspect we will immediately turn around and leave again for NY. The Dr in NY would like to see us by Monday the 11th, so we will have a very quick unpack and repack for the next leg of our journey. Jeremy and I plan to fly out to NY together and then he will return home to work -- we hope to trade off weeks through the month until she finishes the treatment.

The ladies of Ryan Lawn & Tree are organizing a walk for Avery after she completes her treatment in NY. It will be June 4th at Shawnee Mission Park - so save the date! As soon as we have more details I will make sure to post. It will be so great to see everyone again. We sure hope everyone can make it out. By then she may actually have some hair coming back in and she may even be able to walk a little bit herself! Course we have the bling bling gold walker as a back up - so no worries there.

Every day - something amazing happens or is shared with us. On Friday we were assigned to a nurse to prep us for surgery and while we were waiting for the surgeons to finish up the case before ours we got to chatting. This nurse was so excited to tell us that her 3 year old son had been diagnosed with Neuroblastoma and had also gone to Sloan Kettering for the 3F8 Clinical Trial. He relapsed 3 times before doing this study and this was the last treatment he received. Crazy huh? Want to know what is even better? Her son is now 24.

Kinda gives you the chills - huh?

Next.... today a coworker told me that his teenage daughter follows very closely with Avery's story and she has shared it with many of her friends and their family's. On one particular occasion she was over at friends house and sharing Avery's journey with the friend's aunt who is pregnant. A few days later this friend called to tell her that her Aunt had decided to name her baby girl Avery. So for most of us that don't have a child named after us -- My two year old does -- kinda makes you want to cry huh?

Like I said -- amazing. This experience has opened our eyes to so much and while it sucks...and I mean really sucks, to be going through this, there are some amazing things that we would have never done/thought/said/shared/experienced if we weren't on this road. We are different people than we were a year ago. Better, in so many ways. Stronger, for so many reasons. And blessed with so many amazing things. The harder you work the more it means to you -- I am just waiting for the day when we can finally stop working and start enjoying life a little more. In the mean time -- we roll up our sleeves and keep on trekking cause bottom line is You Don't Have a Choice.

Friday, March 11, 2011

New Port In

Avery had surgery at noon today to replace the port that was malfunctioning. The surgery went well and they were very pleased with the results. They did have to move the port to the other side of her chest unfortunately, but at least the right side will have some time to heal then. We have started the count down again until a bath and swimming can be achieved. Today is day one -- we have to wait till day 14. The port was unfortunately broken when it was accessed at some point this week. They put a titanium one in this time, so we won't have that problem again.

Avery seems to be unphased by today's events, all though she milked it for all she was worth right after she woke up in recovery. She pulled the sad face and whined a little bit and literally the moment we walked back into her room she lit up like a Christmas tree and wanted to play. Really kid? Seriously? I think we are going to have a problem here as she gets older.

The plan is to do another 24 hours of fluid and then we should be discharged tomorrow evening. We are really excited to get out and maybe enjoy some of the sunshine we missed today. Then we watch as her counts drop and slowly come back up. I'm sure next week will include a transfusion or two, since we already had a transfusion last night of blood. Hopefully she will continue to feel good through the next 2 weeks and her eating will continue. We are definitely done with the Old People Milk. The bottle has lost it's luster and we have moved on to strictly big girl cups. Her favorite is the 28 oz glass with the mega straw that they give patients at the hospital. She now has her own glass and it's almost as big as she is. Whatever makes her happy - right?


Thursday, March 10, 2011

Last Day Excitement

Today was supposed to be Avery's last day of chemo -- forever - for the near future -- for now...but regardless it was the last one planned for her at this point in time. This is the first time we truly have been able to say that, as we had maintenance chemo for 6 months after the last bout of chemo. Unfortunately, someone had another plan.

This afternoon after her Cyclo had run we noticed blood on her t shirt. This was coming from her port site and was concerning. They removed the needle and set us up with a regular line and then scheduled us for a quick dye scan to see what was going on. The ladies from the inter- vascular division came up and poked her twice - both times she didn't make a peep, and found a good vein in her hand so we could resume the fluids to flush out the chemo. We then took her down to the radiology department and flushed dye through the port and took pictures. It was discovered that her port line had a hole somewhere and that it needed to be replaced. Luckily, we were able to sneak onto the schedule tomorrow at noon and then we can finish the very last dose of chemo that she didn't get today. We will then need to stay for 24 hours of fluid so our Friday break out day - has now turned to Saturday. Nothing in the big scheme of things and something we will gladly take if it helps us in the long run. She will need to be knocked out again for surgery tomorrow, so she won't be her wild and crazy self this weekend. Luckily Nana is still here and waiting for some snuggles and rocks that she will most definitely get.

Biggest disappointment is that the new swimsuits will not be put to use quite yet...her steristrips had finally fallen off...the port access was almost done...and the swimming pool was calling our names. I guess it will just have to wait a bit longer!

This little girl never ceases to amaze us....the only tears that fell were from being overly tired after being stuck with needles 3 times this afternoon and lain on a hard table with a huge box in front of her face for xrays....even then, it was only a few and never a sound. I can't even make it through the singing at church without crying - good lord. How ever did we produce such a strong little person - I will never know. She has carried Jeremy and I through this experience and we are so humbled by her daily. Kiss your kids people...


Tuesday, March 8, 2011


It's official....our last round of chemo FINALLY started on Monday. We honestly couldn't have told you whether or not we would have made it in. Just when you think you know the chemo and the cancer and your child -- wham! it changes... But luckily after some dramatics surrounding the politics of who could draw blood and drop it off at the lab, we got the call we have been waiting for for 2 weeks -- Avery made counts! So off we went to the clinic at 3pm where we promptly sat for an hour and a half, starting pre fluids, pre meds and even the chemo, before they moved us up to 4 Henson. Course when we moved up there we were put into the transfusion room while we waited for a room to be cleaned....finally after an hour of that I asked what the hold up was and they said waiting on a crib. A CRIB?? You mean to tell me that Nana and I have been entertaining her in a common room while you look for a bed? I don't need the bed at 6 pm for God's sake! Just let us in the room so she can play. I swear....some people's children....

Anyway, point being we have finished day 2 of the 5 day course and couldn't be happier. She was good today, although she went to bed really 7:30 early. We all know that isn't normal -- I mean last night she refused to go to bed at 10:30 and was throwing a fit every time we laid her back down in bed. Crazy - but I do suppose those chemo meds mess with the body pretty early into your 6th round (or 10th for the year) of chemo. We will most likely be in for a slow to rebound count game again this month and her energy level may stay a little low for a bit longer, but bottom line is it will come back up and we'll move on to our next weapon.

Avery has been talking a lot more in the last few weeks. Something we are very excited to hear. She can of course say Daddy and Jersey (the dog) and we even heard a few Nana's yesterday... what she can't say is MOM - MOMMY - MOMMA - or MA....she calls me DAH. Really? I gave birth to you....fed you......gave you thick, beautiful hair(when you aren't bald)....dress you all cute for your boyfriends and you can't say mommy? Seriously?

We are anxiously awaiting the approach of a swimming pool as our steri strips fell off this week and the chemo is done this week and then counts will come up soon...I even purchased a new "mommy" bathing suit that was a little more appropriate for wearing around lots of kids. Jeremy vehemently said no to the One Piece indicating that I was too young to wear that. However, notice at 26 he told me I was too old to have a belly button ring. Really I can't win.

The next few days should be pretty simple and we expect them to go by quickly, especially with Nana around for entertainment. There was a short period of time last night where the nursing staff put us into ISOLATION by accident and we very sweetly told them to take us out or I might start a riot in the hallway...needless to say it was fixed rather quickly.

Lastly, thanks to all the friends that were able to make it to the house tonight for the Rendi Party. It was nice to see everyone and get a chance to hang out for a bit. For anyone that wasn't able to attend, or was just is the website: The party will be open through Sunday and there is a buy 2 get one half price deal. These are adorable wooden frames and wall hangings that can be personalized for you. They range from $20-50 a piece and make great wedding or baby gifts. Let me know if you have any questions - all you need to do is get on the website and order directly from there. The party number is 165 but she doesn't have any parties open right now except mine, so no worries if you forget. My email is if you want more info.

Thanks for all your continued prayers and support....let's hope this one is smooth and quick and that she recovers without any additional issues!


Friday, March 4, 2011

Chemo Pushed Again

Tried again today -- 4th time. No go - she is still sitting in the 400 range and we need her to be above 500 to be admitted. We'll try again on Monday. In the mean time, Avery is having a ball and going strong. She is all over the house and has major opinions on everything. We have definitely hit the terrible two's! This girl knows exactly what she wants to do and when she wants to do it and if you are not on board -- you are going to hear about it!

We lost a friend this week but added a new member to Team Avery in heaven. Please keep the Hughes family in your prayers this week. Candy was an amazing woman and a very strong fighter. She will be missed by many.

Nana is arriving tomorrow and we can't wait! We get a whole week of Nana time and we both need it...Unfortunately we most likely will spend the entire week in-patient but Nana is good at entertaining us up there so that's ok.

Other than that, we are still waiting on word from NY on a start date for the new treatment. St Jude has bumped back our next MRI/LP and Ommaya surgery to the first week in April, so we know we won't be headed to NY until after that. So for now we wait. Avery seems to be doing great with her PT and we have seen some progress in her pushing up to stand. She of course isn't standing on her own yet, but she may be getting closer.