background theme

Tuesday, November 30, 2010

No Results Yet

Results for the Lumbar Puncture were not back by the end of the day. As soon as we know something tomorrow I will try to post or have Nikki post - as tomorrow is our MRI. We have to be to Childrens Mercy South at 7am. Her MRI is at 8am and lasts 2-3 hours. We are hoping to be out of there by noon but without any results for the MRI. Once again we hope to have these at the end of the day, however seeing how fast the move over at CMH -- more than likely it will be Thursday before we know anything. Then on Thursday at 10 am we are to go in for her admin check up (they check her out and ok her for chemo). 5 days in case anyone is bored this weekend -- 4th floor Henson is the plan. FYI : Both Avery and I like Starbucks Iced Chai Teas with Soy milk and vanilla....Just saying....this little girl will suck it down -- I have to pour some into her sippy cup to get her to slow down and share!


Holiday Cards and Addresses

Usually I attempt to make this process easy on myself by using spreadsheets and adding addresses to that spreadsheet as the year progresses. This year however...I have not had the luxury of time, consistency or control so I am in need of your help.

We would really like to send out Holiday Cards to everyone that has been so supportive of our family throughout this guess is that many of you do not yet have a picture of our strong fighter Avery. So if I have not sent you a card in prior years please help me out by emailing me your address to add to my list.

This is also a prime time for me to mail out keychains and T shirts - so if you are wanting one of those as well just let me know. We have infant through XL sizes - all are the black t shirts and I have lots of key chain options to choose from (see facebook).

Don't forget the addresses!


Post Lumbar Puncture

Avery had her lumbar puncture/spinal tap this morning. Her and I went in bright and early by ourselves as daddy has some sort of bug and wasn't able to come. The procedure went fine -- poked her twice. They semi-sedated her which really just means they gave her meds to make her loopy. In no way did this stop her from moving and they actually pushed a little more half way through with the hopes that is would settle her a bit. Good news is that it appeared to have no more affect than the previous dose and she continued to wiggle and talk to me the whole time. It took me and a nurse to hold her down as she apparently was not interested in laying on her side for the Dr. With numbing cream and her good drugs, she was fine - just wanted to play. We had a good giggle over her intoxicated state and she smiled at us from ear to ear the whole time. All in all - I very simple procedure.

No idea when we will get results of the lumbar puncture - tomorrow at the latest but hopefully today. As the Nurse Practicioner stated "we are at the mercy of other people doing their jobs". That made me laugh -- then I asked her if she ever watches Grey's Anatomy -- which of course she doesn't as it is not a realistic view of how hospitals work. Last week's episode featured the residents on call at night....similar to the way things work at CMH. In the show, a mom of a young boy starts rattling off symptoms for her son and asked the resident to call the attending dr. She does and the attending has to come in. They determine the child has gas and he leaves, however the mom is not satisfied (apparently she is a nurse at another hospital). So she simply calls the Chief of the hospital and drags him out of bed. Needless to say -- Poop hit the fan! I died laughing and told our Nurse Practitioner they better hope I don't get a hold of Childrens Mercy's Chief or there could be a whole lot of drama!! giggle giggle...

Better get back to de-germing my house from Jeremy's bug. Once it gets one of gets us all...and we have a date with some Chemo this week so we need to be healthy and ready. Otherwise poor Aunt Nikki might be spending her weekend in isolation with Miss Avery while mom and dad recoup!


Monday, November 29, 2010

Pics from the week


Another Thanksgiving has come and gone and we can both honestly say we have so much to be thankful for. This last year has been a chaotic rollercoaster of emotions, but we are so thankful that we've had it easier than some, mostly due to our ferocious little girl's vitality and determination, but also due to all of you. Jeremy and I would not be where we are without the support, prayers and get up and fight attitude's that you all have brought to the table. (ok and sometimes my meds are part of the solution too : )) As you all sat down to stuff yourselves full of turkey and pie, we hope that a little piece of you felt that gratitude from the Christiansens.

Avery has had a good week by far. It started rocky with our losses and a vacation at CMH, but has ended rather pleasantly with high counts, lots of giggles, and too much food. We visited with family and friends this week and stuffed our bellies silly. Harry Potter was also a huge deal - as it always is for this family...ok well for me -- and I was able to catch it twice!! With Nana in town we were able to put up the Christmas Tree and let me tell you what a treat that was for Avery. According to Jeremy I have a lot of "crap" on the tree -- but the more crap you have, the more it looks like a tree from the Macy's window display. Who doesn't want that?

This week is a stressful one for us. We always talked previously about the "Scanxiety" that we feel prior to her MRI's but this one is nothing compared the the last 15 of them. Tomorrow we will go in first thing for a Lumbar Puncture. She will be sedated for this and we hope to have results by the end of the day. The lumbar puncture in October is what showed us the cancer cells had moved into her spinal fluid and were beginning to form. The goal for tomorrow's procedure is to see a dramatic drop in the number of cells present in the fluid. If there is a significant drop, then we can continue the salvage chemo and look at other clinical trials. If there is not, it means things are not working and continuing will not offer us more time as we had hoped. Her MRI is on Wednesday morning, and we are looking for no change on these scans. All along, these have been clear of any additional tumors, including October. We are praying that this is still the case. We hope to get results the same day, however it all depends on the dr's. As soon as we know something we will post. Please put on you extra special praying gloves on any and all angels you know of...and kiss your kids like you really mean it. Mircales do happen & we are expecting one here soon, so stay tuned.

And just for the record -- I won the wishbone wish.....anyone want to guess what I wished for??


Monday, November 22, 2010

Low Counts, Admission and Saying Goodbye

This weekend ended up being bittersweet for the Christiansen family. We had a fantastic time on Saturday morning at the Pancake Benefit with all our friends. And it was great to see everyone, especially those we hadn't seen in so long. Then on Saturday evening we received some sad news. Our friend Lucy, whom I have written about previously, earned her angel wings on Saturday afternoon. Lucy put up a huge fight with this awful cancer and her courage and determination were awe inspiring to those around her. Although we didn't know her well, we feel a connection with her and her family as they have been walking this road with us. It takes an amazing amount of strength, determination and grace to face this monster and Lucy did an excellent job. Please pray for her family as they try to find peace in losing such an amazing little girl.

We then awoke Sunday to hear that Jeremy's Grandma Lippold had also earned her angel wings. Grandma Lippold was an amazing woman - strong and independent. She raised 5 wonderful children and had a whole slew of grandchildren and great-grandchildren - one of which is Miss Avery Anne. She has joined the Team Avery Team in heaven and will be rooting on our continued fight from above with Grandpa Joe, Grandma Johnson, Chuck, Grandpa Lippold and Lucy. Please pray for Jeremy's family as they too attempt to find peace with her passing.

We had a rough night last night, as we could tell Avery's counts were down and her hemoglobin had dropped. She was restless all night and struggled to get comfortable. Our appt this morning was at 8:30 and I expected to have to get transfused, but imagine my surprise when the nurse indicated her hemoglobin had dropped to 6.9 and her platelets were 4. Needless to say, this is extremely low in both cases and she required a transfusion of blood and platelets. The process for all of this is slow and we spent the whole morning waiting....waiting for counts, waiting for blood, waiting for a room. As we were transfusing blood she spiked a fever and BAM! in patient we go! Once again we cultured her blood and started her on antibiotics.....C Diff here we come.

After filling up her tanks, Avery was feeling much better and has been on the move all afternoon. She had a visit from Great Grandpa and GJ before they have to leave tomorrow. Nana is staying the week, which comes in really handy as Jeremy will be driving to IA tomorrow to see his family and for services. We spent Halloween here in the hospital, but are determined to not spend Thanksgiving here. We'll see how that turns out. For now, Avery seems to be better although her fever is teetering on the edge of 100 degrees.

A rough weekend for us by far, but we are hanging in there.


Saturday, November 20, 2010

Avery's Absolutely Amazing Day

Avery had a an absolute blast today! Thank you to all of you that braved the cold this morning and managed to make it out to the pancake breakfast. It was a huge success and we truly believe this little girl had an amazing day. We are so amazed at all the support for our family and we'll never be able to express our gratitude enough.

Avery has since gotten her 2nd wind and is entertaining Nana with her ball machine. Those balls spit out everywhere and poor Nana crawls all over the place to put them back in. No wonder we are always so tired!! We'll spend the rest of the weekend with Nana, GJ, Great Grandpa, Uncle Rob and Aunt Amy. Penny the pooch is also here to entertain us, and we all know how much she likes the puppies.

For anyone not able to attend the festivities, we have Team Avery T Shirts, Keychains, and stickers available. Send me an email if you are interested and we'll get them to you.


Jeremy, Jenn & Avery

Friday, November 19, 2010

Avery's Amazing Day!

Avery is very excited for tomorrow! The pancake breakfast starts early at 8 am and we can't wait to see everyone! Aunt Nikki and her troops have everything under control and we are pumped to see the results. Avery's counts are down to 0 already so Nana will be running around with hand sanitizer tomorrow...don't be offended if she makes you do it 5 times while there. You aren't special -- she'll be doing it to me too.

Avery appears to be healthy and happy and so excited to see all her friends tomorrow. We are going to try to keep a mask on her, but you all know how easy it is to make a toddler do anything they don't want to do. She was able to have a few play dates with her buddy Henry this week and we quickly realized how sheltered she has been as she fought him for the Pink Coupe Car and her necklaces. Lucky for us, Henry spends a lot of time giving up his toys to his older sister Vivian and he happily relinquished his goods to her.

Nana arrived at 11:30 this morning and we couldn't be happier -- she woke up really early to drive all the way from MN. Later this afternoon GJ and Great Grandpa will be here as well to play. Avery is resting up now for all her visitors. Aunt Angie is coming too and she has lots more key chains for us to work on. Uncle Rob and Aunt Amy will also be here later and they are bringing a new friend -- Miss Penny the puppy -- to play with us.

We hope you call can make it tomorrow -- remember it starts at 8 am and goes to 12pm. It is located at the Fraternal Order of Police on 162nd and Metcalf. The flyer is attached in last week's post if you want to see again. We can't wait!!

Jenn and Jeremy

Sunday, November 14, 2010

Team Avery Bonfire & round 2 of ICE Chemo

Avery completed her 2nd round of the ICE chemo treatment today. She did excellent as usual and we experienced no puking or complications. Her counts are stable for now but we expect them to drop hard and fast in the next few days. This round we plan to avoid fevers and any additional stints in the hospital as we are still in isolation and you know how we love that.

We had a lot of visitors this weekend and that helped greatly in passing time. Thursday Chance and Angie Mander came to spend the day with us. We finger painted and played all afternoon! Both kids were out like lights early! Then Aunt Angie arrived and we spent all day Friday playing with her and working on Team Avery Keychains. Then Aunt Nikki and Harper came to play. Daddy and Grandma Lippold came later and then so did all the Manders again. Once more we had a tired little girl on our hands who promptly crashed. Saturday we visited with Angie, Nikki and Harper again and then our friends from Des Moines, Megan & Missy came and brought lots of yummy snacks.

Last night Grandma stayed with Avery while Jeremy and I and all our friends went out to a friend's house for a BBQ and Bonfire. It was a fantastic time and it was so nice to see everyone out and in a more entertaining atmosphere. We really needed some away - normal - time and that was a great evening for it. We are so appreciative to Tiffany and Mitchell Dooley and all of their family for putting on such a fabulous evening. And thank you to all of you that were able to make it. The Team Avery T shirts and KeyChains were a hit and they will be at the event next weekend as well in case you are interested.

This week we plan to work hard on our words and our walking as we didn't get a whole lot of practice while we were in the hospital. Before it gets much colder we need to get as much exercise in as we can! Heard about the snow in IA and MN -- warm wishes are being sent from the warmer climate here in KC. Although secretly I can't wait for us to get some snow as Avery will love it!

Just a reminder to all -- if you can join us next Saturday morning, please do! Avery's Amazing Day begins at 8am with a pancake breakfast and lasts until noon. There should be plenty of activities for everyone and we'd really like to see you all. Avery plans to have the time of her life with all her friends!


Saturday, November 6, 2010

Avery's Amazing Day - November 20th 8am

Broke Free

We finally managed to break free of the hospital on Tuesday night. The Dr made a comment that she would let us go home that evening if Avery had not spiked a temperature by 7 of course we were monitoring that like a hawk. I think we took her temperature 52 times between 6:15 and 7:00 and while it wasn't "normal" - it wasn't 101.5 degrees so we were finally able to high tail it out of there. The Resident came in at 7:15 and asked if they had rechecked it and when we told him no but he could do it, he stated the nurse would handle it and then they would make a decision. Little did he know we were packed up and hitting the road no matter what. After almost 2 weeks and nothing growing in her cultures, we had decided that she has a cold and needed a good night's sleep in her own bed. Sure enough, here it is 3 days later and cold is gone. In the mean time, we discovered part of the reason she wasn't eating is because she is teething. 2 teeth appear to be coming in on either side of her mouth making eating a pretty uninviting option. This could also be a factor in the fever, all though all dr's agree that teething doesn't cause fevers. I'm pretty sure I could come up with a huge panel of parents that would disagree, but whatever. I'm not the one with the DR in front of my name. I do however have a pretty important title in front of mine....MOM. I'd like to see anyone argue that I don't know better about my kid.

Went to clinic on Friday to check her labs and told the NP Jen Sullivan, that we'd be very close to 500. She smirked and said "you think so?" -- 45 mins later she was in shock as she told me her ANC was up to 450 -- Um -- no DR, but pretty sure I am that good. I'm really not sure why they don't listen to me more. Seriously. She has C Diff, check it -- oh looky there -- she does! St Jude was really great about that. You always felt like you were a part of the team taking care of your child. Your input matters, and your opinion is important. I think that is the toughest thing about not working with St Jude, CMH just doesn't value what you have to offer as the person with the child 24/7.

Nana left on Wednesday and we were very sad to see her go. She sure keeps us on track and takes care of all the crap work so we can focus on Avery. I keep trying to convince her to move into the house across the street, so far she isn't biting. Avery just has a ball with her. I swear she keeps her so entertained with the most ridiculous of items. How you can play with 2 pennies and a broken eye glass case for 30 mins straight is beyond me, but she just loves it! Not to worry, Nana will be back soon enough. I managed to finagle her into staying an extra 4 days so it was about time I let her go home and sleep in her own bed and see the puppies.

Avery's hair has fallen out again. Not a big deal, but for those of you that have seen her recently, it may come as a shock when you see her. She looks much more the part of the cancer kid without any hair. Good news is it's now winter hats will be a more tolerated accessory on her part when her head starts to freeze! Good thing for me because she will now be able to wear the ridiculous amounts of hats I have spent a small fortune on this year!!

The plan for chemo this week has been delayed. In order for us to start chemo her ANC has to be at least 500 -- that wasn't the case on Thursday due to her cold and all of our in patient stays. The soonest they could schedule us in for chemo is Wednesday of this week (don't even get me started on the scheduling). So Wednesday we will be admitted for fluids and then Chemo will start on Thursday and run through Sunday. Since it requires 24 hours of fluids post treatment, we will be inpatient until sometime on Monday evening. Avery did well with the first round so we don't expect any issues with this round either. Towards the end of the month, we will have another MRI and Lumbar Puncture to see if this chemo has helped at all. Once I have a firm date on that, I will let you all know. In the mean time, prayers for a miracle are still at the top of the list.

Some of you may have already heard about the upcoming fun, but in case you had not you are in for a treat! Some friends are putting together a terrific event for Avery. On November 20th we will be taking part in Avery's Amazing Day! Located at the Fraternal Order of Police in OP, there will be a pancake breakfast starting at 8 am followed by an amazing day of fun for the kids. Rumor has it there will be a Magician, a Moon Walk, A Balloon Artist, a musical guest, and lots of treats! Please join us in giving Avery an Amazing Day - she sure deserves it! Avery is very excited to see all her friends! If you have questions, please contact Nikki or check out FaceBook.