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Sunday, October 31, 2010

Happy Halloween

At it again....

As if we weren't having enough fun already.... Avery came down with another fever last night so once again we packed it all up and headed back to Childrens Mercy. This time we were able to go right up to 4 Henson instead of hanging out for 5 hours in the ER. Much better than last time. She is of course in isolation again...don't even get me started. I've decided she is destined to be a loner that plays with adults only -- good thing I am total riot most of the time.

She had a fever last night when we came in of 101 degrees and they gave her tylenol -- that lasted for a couple of hours and it slowly crept up again. She had a rough night as we suspect her tummy was giving her troubles. She spent a good majority of the night whining to herself and waking up, only to be consoled by daddy--- standing up.... he he he. She wanted nothing to do with me but of course wouldn't let daddy sit down in the chair either - figured that makes up for not wanting mommy. None of us got much sleep and 7 am came way too fast. She has had a low grade fever this am but seems to now have gotten rid of it for now.

Nothing has come back in the cultures yet so more of the same. Dr's say they don't expect much to show up and plan to finish antibiotics and kick us out after 48 hours of negative cultures. The good news is that her Hemoglobin and Platelets dropped dramatically and she was in need of transfusions last night so they got her all hooked up. (hmglbn - 7.0 and Plts 26)

Her hair is an absolute riot at this point. When it starts to fall out it tends to dry out and stand up a lot....and this time we actually have hair to stand up! It is the worst case of bed head I've ever seen -- of course making us laugh. It's dropping quickly and I suspect will be all but gone by next weekend. It's a good thing she looks good bald. Very annoyed we just bought a brush for her on Wednesday -- well at least it will come in handy when it grows back in.

Halloween is somewhat defunct for us as she is in isolation and can't participate in anything at the hospital. Good news is out of all the things I forgot to pack last night -- the Tinkerbelle outfit was not one of them! So, we'll snap some pics this afternoon and get them posted for all to enjoy. We are bummed she is going to miss out on the Trick or Treating cause I think she would have really loved that. Jersey has also lucked out as I am not home to put on her tutu and wings for the kids tonight.

We are doing fine...plenty of food -- as Nana is baking our dinners at the house and bringing them up for us to enjoy. I will say the bed here at CMH is much more comfortable than the couch/benches at St Jude...even if I have to share it with Jeremy.

Avery is content to play with the toy microwave I found in the play room and pretend to eat the fake food. She also finds watching the pigeons on the ledge highly amusing, even if they are sitting among their own feces and a dead buddy. Ugh. Once again, no mat to play on - but making due with the bench.

Jenn & Jeremy

Tuesday, October 26, 2010

Fever and Neutrapenia

Avery started running a fever Sunday night around 8 pm. The rule at CMH is that 101.5 is considered a fever and requires a call to the Nurse on Call. So naturally at 101 degrees we called....The nurse told us to come in so at 10 pm on Sunday night we were on our way to the ER with a possible admission in our sights. After being seen in the ER and after taking a chest X-ray they decided to admit us. At 2 am we finally had a bed upstairs. After getting her settled and trying to go to sleep, (at 4am) I watched her toss and turn and start to shake. We grabbed the nurse who confirmed that she had spiked another fever - this time 103 degrees and in came the cavalry again. After another hour and a half of antibiotics, tylenol, and a lot of rocking with daddy we finally got her calmed down enough to go to sleep. 5:30 am.

Cultures have been negative so far and the chest x-ray was clear. They can hear some faint crackling in her chest and today her nose began to run. They are treating her for pneumonia although she hasn't technically been diagnosed. She has 2 antibiotics running now and the plan is to stay another night before being discharged tomorrow on oral antibiotics. You all know where this road leads....C Diff -- so I assume next week when we come back in for her next round of Chemo we will be in Isolation again - our favorite. We are in isolation right now since we were at another hospital recently and they can't test her for VRE. Erring on the side of caution - we are in isolation, of course.

She was feeling much better yesterday after waking up at 9 am and then again today. They can't quite pinpoint the cause for the fever at this stage, so they just treat her with antibiotics. Her counts are still at 0 and last night they transfused her platelets as they were getting rather low. Hopefully we are working our way up now and the next few days will raise her counts. All in all she has been having some fun as Nana & GJ are here, as well as Aunt Aubrie.

Jeremy and I are hanging in there...sleeping on the little bench like before, proves that we are indeed too old. But we manage. Thanks for the continued support everyone....once again Avery is such a fighter, small bump in a long road, but one that she handled with grace and ease.


Saturday, October 23, 2010

New Update

I know its been a few days since our last post...we apologize for not updating sooner. Jeremy and I have been struggling with our emotions the last few days and to tell you the honest truth, it was all we could do to make it through the day. I've considered today a success in terms of dealing as I have only lost it twice - considerable improvement from the previous 7 days. The bonus is that now we have something else to focus on - visitors. That helps.

Avery's counts are down...ANC of 800 yesterday and her hemoglobin was at 7.4 - which means we made them transfuse. Typically they wait at CMH to transfuse when they are below 7 -- St Jude uses 8 - I freaked out and won. Small battles right? After the 4 hr transfusion she was a much happier girl and full again of giggles. We will wait for her counts to drop off entirely and then come back up. We are then scheduled to go in patient on November 4th again for 4 more days of Chemo. After that round we will do another MRI/LP to see if the treatment is helping. If it is, we can continue for a few more rounds. If it is not, then we will stop.

Grandma Lippold and Uncle Jason arrived on Thursday night and spent some time with us. Today we went to the Zoo - absolutely perfect day for it. Humid and 75....typical Kansas City random weather in mid October. We were also followed around by paparazzi...aka - McKenzie Ring, who has graciously offered to document a weekend with us. She snapped away while we toddled around the zoo and I'm sure caught some great shots for us. We are so grateful to be able to have that opportunity and that we could do it with a friend, rather than a stranger. So thank you McKenzie. (she's from the Omaha/Council Bluffs area - so if you are looking for a photographer let me know!)

Tonight we arrived home to Nana. She drove down from MN today and will be spending the week with us. We were really excited, because Nana always arrives with entertaining gifts. This time she brought a new necklace that lights up, stickies for the windows, and light up-spinny thingy that glows. Needless to say Avery was thrilled. Tomorrow when we wake up GJ will be here as well. Yay! This week is also our week to carve pumpkins and put on our costume....daddy is not cooperating and is refusing to wear the green tights, so Tinkerbell might not have a Peter Pan this time. I'm taking volunteers if anyone has the guts....

Jeremy and I are trying our best to make sure Avery has as much fun as we can possibly provide her. If anyone has any brilliant ideas - we'd love to hear them. Thank you again, to everyone for all of your support. This time it's going to be a much heavier emotional support system that is needed and we are so glad to be back in Kansas City surrounded by people who love us.

Still praying for and expecting a miracle...

Jenn & Jeremy

Sunday, October 17, 2010

This weekend....

In Patient Stay

We were admitted on Friday afternoon and Avery started her new chemo around 10 pm that night. Chemo went fine and yesterday she was her normal rascally self. We spent some time outside in the garden again and walked as much as we could. She has been on fluids the entire time and as a result woke up pretty puffy this am. For those of you that saw me right before I had her....that's what she looks like. Jeremy and I laugh as she finally looks like me! Of course the swelling will go down in a few days once they cut her fluids. For now, they are neccessary as we have all those crappy drugs in her again. She seems to have a fine appetite so we are hoping we have the nauseousness under control. No nap yet today -- we'll see how long she lasts. She seems to be a bit weak and lethargic today - but still full of attitude at the same time - trying to get around like normal. She and daddy are watching some football while she plays on a really loud keyboard piano. Makes me laugh.

We are anxious to finish this stint up so we can get back on the road and head home. Jeremy and I are having a better day today. It appears we needed a few days to catch up to the rest of you and now that we are there - we are ready to start investigating our options. Avery is too strong and too important to not make sure we check out every thing out there. I can't imagine a world where she doesn't exist so for now - we just won't and we'll move forward with the next steps. We are looking to see what protocols are available at other hospitals for children with recurrences of Medullablastoma. At the same time, we'll be looking at what changes we need to make at home to give us the best situation for the 3 of us possible.

This sucks. No one should ever have to do this. We are mad and frustrated, confused and disappointed, but mostly determined. Determined to make sure we give her every last chance we can. Determined to make sure she has everything she could possibly want. Determined to beat the be that mystify the Dr's and shatter the expectations. If anyone can do that -- it's us. Avery has so much more to do in this world and we are going to prove it. With God walking right beside us the whole time -- we will make it through this - failing is not an option.

We need all the prayers out there that you all can muster. We need everyone to give this to God and know that he will make it right. And we are going to need a lot of support. We've asked so much of everyone already, but we need even more now. The gloves are back on - bring it.

Jenn & Jeremy

Friday, October 15, 2010

I know how to help

Hamming it up for the camera as she helps daddy flush her lines. It's amazing how far we've come since last December. We took a baby in for an ear infection and now we all have nursing degrees - including my little girl.

This is a rough road people. I can't explain it. I'm not going to even try. But what we need right now is to give her every last ounce of a great life that we can squeak in. That includes getting the opportunity to see all the people that love her so much. So when we get back, we want to make sure that happens. In the mean time, still expecting a miracle so keep the prayers coming.

Thursday, October 14, 2010

Rough Day

Jenn and Jeremy received the results today from the MRI and lumbar puncture, and sadly, they were not what we’ve all been praying for. There are cancer cells in Avery’s spinal fluid and the prognosis is not good. They met with their doctors at St. Jude’s this afternoon to decide what their next steps would be. They are going to begin a new chemo protocol called ICE at St. Jude tomorrow. This will involve 4 days of chemo and then they will come home to Kansas City where they will continue this protocol from Children's Mercy. She will get the chemo every 4 weeks. Most importantly, though, they will be home, together as a family.
The coming days, weeks and months are going to be extremely difficult for Jeremy and Jenn and their families. I humbly ask that you pray for them. I ask that you pray for peace as they make decisions that no parents should have to make. I ask that you pray that they find comfort in whatever decisions they do make. I ask that you pray that they get to enjoy every second they have with that sweet, sweet little girl. And most importantly, I ask that you pray for a miracle.

Tuesday, October 12, 2010

St Jude Day 1

We arrived at a fairly decent hour last night around 11:30pm to find that once again we'd been cast to overflow lodging over at Target House II. Not a surprise as it appears the only time we actually get to stay at the Grizzly House is when she is in isolation. Not asking for that -- so we are good! Avery was awake almost the entire ride -- slept for 30 mins at one point, but at 11:30pm she was wide awake and ticked at still being in the car. Needless to say, going to bed was a struggle after that

Today was a busy day as we had to be at labs at 7:30 am. We met with the nutritionist, who gave us a calorie builder called Dualcal to add to all the things she eats. She weighed in at a whopping 9.5 Kilos which is about 20.9 lbs. She also measured in at 32 inches tall, which means she is still growing a bit! Our goal is to get her closer to 24 lbs so we'll see what we can do. Next month makes eating difficult so we need to fatten her up in the next week and a half before we start the next round.

Next we met with the Dentist who suspects we may have an issue with our enamel on our teeth - so we will be paying extra attention to that. PT went well and Miss Lauren showed us some new exercises on the big ball that help us focus on core muscles. We don't have one -- so for those of you out there that bought an exercise ball with the best of intentions....and no longer have those intentions -- we need one. Miss Lauren was very impressed with her progress and attributes some of her struggles to lack of weight/muscle gain. We'll be working hard on both these next few months.

After PT we met with NeuroOncology - Dr Armstrong and Lindsay. They did an exam and were very pleased with her growth over the last 3 months as well. They gave us great news and said they don't anticipate us needing to keep her Hickman catheter (BOOB TUBE) in her chest past her next appointment in mid January. The only reason for us to keep it is if she has complications or her counts are not stable and warrant rechecking weekly for a period of time. That being said -- she will finish her chemo on January 14th 2011 - and her 2nd birthday is a week later.

We also met with the Audiology department and they have indicated a transmitter/receiver option is something we need to start thinking about. For those of you who have no clue what I am talking about (as I didn't) this is a device that will be worn by whoever is in charge in a group setting. For instance the teacher, the story tell, the coach, the mommy -- whatever person it is crucial she hears in an environment where background noise can interfere with her ability to hear what is important. Yes someday, she will be carrying this with her and handing it to each teacher at the beginning of class.

Overall, I pleasant but long day. We met up with some of our friends including Belle, Megan, and Collin. It was great to see them all -- a little reminder of the amazing journey that we are all still a part of. Tonight we plan to have dinner with Megan and Brandi at the Target House. Megan had a rough day - as did Brandi. They are concerned she may be having seizures and did an EEG to check brain waves. Needless to say -- that freaks us all out. Tomorrow we meet with OT, Speech, Optomology and she has her MRI/Lumbar Puncture in the afternoon. Results won't be given until Thursday.

Keep the prayers coming....

Jenn, Jeremy & Avery

Friday, October 8, 2010

Avery's counts were surprisingly good this week. ANC was at 1620 - which is almost 300 points above last week. We are very happy about that as we totally expected them to drop lower. Her hemoglobin has dropped significantly although she won't get a transfusion until she hits 8 and she is at 9.6 right now. Platelets are also low - 240k and they are normally above 300 for her.

We are hanging low this weekend as we prepare for our trip next week. The plan is to leave after work on Monday night and drive to Memphis. We won't arrive until after midnight, so it will b e a long day. Our first appt on Tuesday is at 7:30 am and the MRI/Spinal Tap aren't until Wed afternoon. Results will most likely be given on Thursday morning. We will try to post as soon as we have the "All Clear" message.

For now, keep her in your prayers. We are very anxious about this trip and could use all the positive thoughts you all can muster!


Jenn & Jeremy