Wednesday, December 30, 2009

Christmas and New Year's at Motown

The Monday before Christmas Jordan and I spent the entire day at the clinic getting blood and platelet transfusions. I was looking forward to the next two days at home with no appointments...only to have Jordan wake up at 2:00 am on Tuesday with a fever of 102. Since her counts were low, this meant another hospital admission to ensure she didn't have a serious infection. Our only request for Jordan is that next time she spike a fever she do so while we are already at the hospital or at least at a decent time in the evening...we just don't function well at 2:00 am and it took forever to get us dressed and packed because we couldn't think straight!

I was hopeful that because we were admitted to the hospital early in the week we would be out before Christmas but unfortunately that didn't work out. Jordan was feeling well and had no additional fevers, but her counts were low (ANC back at 0) so we had to wait for her to grow some neutrophils.

It was definitely difficult spending Christmas in the hospital and we missed getting to celebrate with our traditions. Craig brought in finger paints for a special Christmas day activity, but we were way more interested than Jordan. I kept reminding myself that despite being in the hospital we were very lucky to have Jordan with us and in such good, she's not old enough to really be into Christmas so this was not any harder on her than a regular hospital stay.

Jordan's counts suprisingly jumped up on Saturday so Dr. Gregory discharged us home. Going home was even more fantastic than usual since it was unexpected, and we celebrated Christmas by opening presents and sharing a turkey dinner with Craig's parents. It took forever to open presents because Jordan wanted to thoroughly inspect each gift and had to take a break for a nap but it made for a relaxing and enjoyable afternoon. We also watched a video my sister-in-law Valerie made for was a compilation of pictures from Jordan's first year and included well wishes from our family in Texas...we laughed, we was a wonderful present!

This week we had appointments at Memorial Sloan-Kettering (SK). Monday's appointment was primarily for us to meet Dr. Kushner and for SK to meet/examine Jordan...both of them were unable to make it to our first visit. :) Tuesday's appointment was for bone marrow biopsies so that we can monitor the progress of Jordan's treatment. We will likely have to wait until early next week to get results. We are praying and hoping the biopsies do show regression of disease.

Today we got a call from Dr. Miller at our oncology clinic who advised Jordan's labs looked good and we would be admitted New Year's Eve for round three of chemotherapy. So it looks like the Plauschinat's will be completing the holiday season at Morristown. After Thanksgiving and Christmas in the hospital, New Year's is no big we have a day of notice and are celebrating tonight. Dr. Miller explained the side effects of the drugs in round three and the one I'm most worried about right now is the hearing loss associated with cisplatin, especially since Jordan already has mild hearing loss from the fluid in her ears. We would appreciate you keeping our sweet daughter in your prayers.

We hope everyone had a wonderful holiday's to a happy and healthy 2010!!

A little maraca music while getting changed into the Christmas outfit

Christmas Eve

Merry Christmas!

Not too interested in the Christmas day art project...but the paint brushes are pretty neat

Christmas at home!

Opening and inspecting presents

Playing maracas in a Christmas sing-a-long

Not quite getting the hang of the cymbals

Standing solo and playing in her cabinet

Tuesday, December 22, 2009

Jordan Meets the Jets, Devils, and Several Santas

There are many generous organizations doing very kind things for children with cancer. Jordan was fortuante to interact with several of these groups this holiday season when they visited the clinic and hospital. Jordan probably was not as excited as some of the older children....she did seem impressed by the height of the Jets but was scared to death of Santa...but I'd like to give a big thanks to these groups for their generosity and thoughtfulness.

Jordan meets NY Jets #21 Dwight Lowery and #75 Rob Turner
(who I found out later via Google is from Austin!)

Jordan meets NJ Devils #9 Zach Parise, #10 Rod Pelley, and #6 Andy Greene

Jordan gets a visit from the CCSG Santa

Jordan gets a Christmas Eve visit from the Morristown Fire Department Santa

Jordan slept through a visit from the Harding Police Department

Monday, December 21, 2009

Christmas Card Story

Craig and I attempted a Christmas card this year....separate pictures of Jordan and Nola in front of the tree as we figured there was no way we could get them to pose together. Unfortunately Jordan has inherited my unphotogenicness (not a word, I know) and cannot keep her eyes open in pictures. We probably took 50 pictures of Jordan and she maybe had her eyes open in two of them...and not much of a smile in either of those two.

When it was Nola's turn, we put on her Santa hat and she immediately posed in front of the shot and we were done. I was amazed. I guess after four years Nola has figured out the routine.

The set-up

The smiling prop...Elmo, of course

Picture #1 with open eyes

Picture #2 with open eyes

One and done

Sunday, December 20, 2009

The Most Wonderful Time of the Year

Christmas and winter are two of the Plauschinat's favorite things...and we have had two recent weekends at home to enjoy them both.

Christmas is definitely our favorite holiday. Jordan was born three weeks early so last Christmas was spent in a newborn haze. When we left the hospital early this December to drive to CHOP, I was surprised by all of the Christmas lights and decorations that we passed…the holiday season had snuck up on us. So we spent the weekend of the 12th-13th putting up a Christmas tree and enjoying holiday music. So far so good with Jordan and the decorations…she seems content to only look at and not touch the decorations but she does have me walk around the tree with her a million times a day. I think her favorite decoration is a new one we received from my co-worker Mary Kay. It has four penguins on it holding a sign for 2009. I think she likes it because we sing Feist's "1, 2, 3, 4" song while looking at it…that only makes sense if you watch Sesame Street as much as we do :-)

I won’t say that winter is our favorite season (football in the fall!) but it is close. We absolutely love the snow and get as excited as little kids when it comes. The weekend of the 19th-20th we got 10 inches or so of snow. Awesome! We didn’t want to take Jordan out in the cold so she and I watched from the window as Craig shoveled and Nola ran around like a nut…Jordan was very entertained. (BTW, for anyone concerned about Craig’s back I did offer a thousand times to shovel myself!)

In between these weekends, Jordan completed round two of chemotherapy…and thankfully it was an uneventful hospitalization with only a little nausea. We did get to finally make use of the hospital play room across the hall and Jordan really enjoyed her time there. She especially enjoyed playing with the kitchen…which is probably because she is used to watching me make so many healthy meals for the family…ha ha!

We want to give a big thank you to Gram who recently went home after staying with us for three weeks. She was a great comfort and beyond helpful as we adjusted to Jordan’s diagnosis. Thank you Gram and we miss you!

Play room at the hospital

Jordan loves this Christmas carousel


Sunday, December 13, 2009

Birthday Pictures

The hospital internet is very difficult with anything considered "personal" (ie. blogs, email) so posting these pictures earlier this week would have taken here they are now :)

An Elmo birthday

Pointing at the Elmo banner

Still pointing at the Elmo banner

MomMom and PopPop

Gram and Gramps

Not at all interested in the cake

Birthday party at the hospital
Jordan only had high fevers the first night of the birthday hospital stay so the rest of the time was spent waiting for her counts to improve so we could go home. We were discharged on Thursday, just in time for a nice weekend at home.

Craig and I did make a quick trip to meet Dr. Maris at CHOP in Philadelphia on Wednesday. Even though we had already decided to start with the Sloan-Kettering treatment regimen, our oncologists advised to establish relationships with both experts as relapse is common in neuroblastoma and we want to have all options available to Jordan. Similar to our meeting at Sloan-Kettering, Dr. Maris was very impressive and confident in his treatment regimen for neuroblastoma. It is very confusing and difficult to have to two treatment options but no trials comparing the success of the two....and very stressful as a parent to have to choose between the two. Anyhow, big thanks to Gram and Gramps for staying with Jordan in the hospital and to MomMom for accompanying us to the appointment.

Tuesday, December 8, 2009

Happy Birthday Jordan!

Jordan turned one on December 6 and we were lucky to be able to celebrate the day with all of her grandparents. We had a Texas barbeque lunch supplied by Gram and Gramps...and Jordan had her favorite post-chemotherapy meal, yogurt and puffs. Craig also picked out a fantastic Elmo cake although Jordan seemed more interested in looking at it rather than eating it. I would guess that Jordan's favorite part of the party was the Elmo birthday banner because she pointed to it throughout the celebration.

Despite all the birthday fun, Jordan seemed fussy and lethargic during the day and spiked a temperature in the evening. Since Jordan's counts are so low, any temperature means have to go to the hospital for IV antibiotics. The labs in the hospital revealed that Jordan's ANC (absolute neutrophil count) was 0...meaning that she doesn't even have one neutrophil in her body to fight off any potential infections. I think taking my daughter to the hospital on her birthday was a low point but it was good to see how she perked up after the blood and platelet we just need the neutrophils to come back and the fevers to go away. We will be at the hospital for at least a few days until Jordan's condition improves a bit.

Thank you to everyone for the birthday wishes for Jordan. I also want to the thank the oncology clinic and pediatric floor at Morristown Memorial, especially Dr. Miller, Gina, and Meg. The clinic had a birthday celebration for Jordan on Friday and the hospital had one on Monday. Both celebrations were complete with singing, balloons, presents, and cake. We are very lucky that Jordan is being treated by such kind and thoughtful professionals who I am sure treat Jordan with the same love and care that they would provide to their own children.

We have also received the results of the MIBG scans. These tests are specific for neuroblastoma and show all the places in the body where the cancer is located. In addition to the bones around the eyes (which we already knew were impacted), the MIBG scans showed cancer in her skull and in the bones of her hips and legs. This was disappointing news as it may indicate Jordan may need more intensive radiation therapy than we had previously thought...and the side effects of radiation to the skull and leg bones are very heartbreaking. So for now I am hopeful that the chemotherapy will effectively treat the cancer in her bones and hopefully minimize any radiation she may need in the future.

Wednesday, December 2, 2009


Reading a magazine...just like mommy

Jordan's tongue sticking out after every spoonful of soup

Once Dr. Miller found the right nausea medication regimen, the remaining days of chemotherapy were fairly uneventful. Similar to post-surgery, Jordan rebounded quickly and went back to playing and exploring...she seemed more bothered by the IV line tethering her down than she did by the chemotherapy. It is amazing to me how quickly Jordan adapts and overcomes...I think it helps that she does not have the same psychological stresses that weigh on adults with surgery/chemotherapy...that and the fact that she is a pretty amazing little girl!

After two weeks of camping out in room 303, we were discharged home on Tuesday. It was absolutely wonderful to go home...I forgot how comforting it is to be in your own space. Nola had been on a bit of food-strike while Jordan was in the hospital and the two of them were ecstatic to reunite.

We had an oncology clinic visit today and Jordan has MIBG scans, specialized neuroblastoma tests, Thursday and Friday. Part of the follow up has been to teach me how to care for Jordan during treatment. In addition to all of the doctor appointments and tests/scans, there are a ton of medications I have to administer to Jordan each of which is an injection. I did learn how to give injections as part of patient assessment in pharmacy school, but if you ask my lab partner Erin she would probably say I need a lot of practice.

We want to thank everyone for all the love and support they have given us over the last two weeks. This has been such a difficult time for our family, but we are grateful to have family and friends to help sustain us....we are thankful for those who have visited us and called us...who have brought us food and groceries...who have sent cards, pictures, and well wishes...who have sent emails and posted messages of encouragement...who have sent toys, books, balloons, videos, and Elmos to entertain Jordan...who have sent care packages for Craig and I...and for everyone who is praying on Jordan's behalf. We are also thankful for our colleagues who have made it easy for us to be away from work and for those who have donated their own vacation time so that I can have time to care for Jordan. There is no way we can properly express the gratitude that we feel, to simply say thank you is not enough...but thank you for helping us and walking with us as we do all that we can to help Jordan through this.