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 spirits...plus, 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 Jordan...it was a compilation of pictures from Jordan's first year and included well wishes from our family in Texas...we laughed, we cried...it 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 deal....plus 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 season....here'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

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

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 tree...one 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

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

Double-O-Jordan

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 forever....so 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.

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 transfusions...now 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.

Home!!

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 day...one 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.

Starting Treatment

Getting into everything during diaper change

Hanging out with mommy in hospital room


Practicing walking post-surgery


Taking a break from Elmo to smile for picture

On Thanksgiving, Jordan snapped out of the post-surgery fog and was mostly back to her normal self…eating, drinking, playing. It was a little difficult spending the holiday in the hospital, but my friend Jenn brought us a delicious Thanksgiving dinner which definitely made the day feel more normal. We have been very fortunate to have several friends provide us meals (Thank you Alex, Heather, Michele, Uncle Paul, Aunt Cheryl, Aunt Sue, Joyce & Milli!), but I have to give an extra thanks to Jenn as she left not only her own Thanksgiving meal but also her daughter Maddie’s first birthday celebration to bring us a meal.

On Friday, Craig and I visited Memorial Sloan-Kettering (SK) in New York City. We were fortunate to have Uncle Paul join us to have an extra set of ears. After talking with Dr. Modak, we decided to go with the SK approach that includes five rounds of chemotherapy as well as a stem cell harvest (but no stem cell transplant initially) and possibly another surgery. SK sees about 65-75% of children go into remission after this initial treatment. Once in remission, Jordan will have antibody therapy, radiation, and Accutane to help maintain remission. It seems like the SK approach achieves the same remission rates as other regimens but with less chemotherapy/harsh treatment. Overall, Craig and I left SK feeling very hopeful.

SK advised we could have the five rounds of chemotherapy at Morristown, and Dr. Miller was eager to start therapy so her first round began on Friday. This first round includes three drugs, two of which are infused continuously over 72 hours. So far, Jordan is experiencing a fair amount of vomiting but Dr. Miller is going to adjust her nausea/vomiting medications today to try to address.

A funny story from overnight….the resident comes in after the second time Jordan vomited and asks if she usually vomits…as if it’s normal for children to vomit multiple times each night…I calmly reply that I think the vomiting is from the chemotherapy. Jordan then begins to fuss and he asks why…hmmm, let me start a list. The best was when he held the stethoscope a couple of inches in front of her face?!? Gotta love residents!

High-Risk Disease

Recovery from the surgery has been a bit rougher than I anticipated, but I don't think Jordan has experienced anything out of the norm. It seems like within the first 24 hours we were concerned about each of the vital signs at some point...although now most of the issues have resolved. The one lagging concern, Jordan's respiratory system, seems to be returning to normal as well. Tonight I could see signs of Jordan returning back to form...she was grabbing anything she could get her hands on and stuffing it in her mouth, including the kleenex box/kleenex...Craig pointed out that if I hadn't eaten in three days I might want to eat kleenex as well.

We received the results of one of the pathology tests today and did not get the news we were hoping for. Jordan’s tumor has MYCN amplification which means she has the most aggressive form of neuroblastoma, classified as high-risk disease. In addition to surgery and chemotherapy, Jordan will likely need a stem cell transplant as well as other experimental therapies. Our current cancer center cannot provide all the necessary treatments for high-risk disease so we will need to set up additional care for Jordan at one of the main neuroblastoma centers in the country, either Memorial Sloan-Kettering in NYC or CHOP in Philadelphia. Memorial Sloan-Kettering specializes in an immunotherapy while CHOP offers a high-dose radiation therapy.

Ideally, we would like to meet with both Sloan-Kettering and CHOP prior to selecting the treatment protocol, but the holiday and a national oncology conference are interferring with our timing. Our plan now is to meet with Sloan-Kettering on Friday, make a decision about which treatment to pursue, and begin chemotherapy on Saturday. It seems like everything is moving very quickly, but it is imperative that we begin treatment as soon as Jordan’s body is recovered from the surgery. We are very disappointed that Jordan has high-risk disease, but are trying to focus on the fact that her cancer can still be cured...it just means she will have a longer road. Please keep praying for our sweet baby girl and also for Craig and I as we have to make some important decisions in the next few days.

Surgery = Success!

Today was a long, long day but such a wonderful day as Jordan’s surgery went very well!! We spent the first half of the day trying to entertain a hungry, fasting child as we were shuttled between appointments with cardiology and audiology in order to prepare for chemotherapy next week. We were already exhausted when the surgery started at 3:00 pm. Fortunately, Dr. Bergman was able to remove the ENTIRE tumor as well as put in the semi-permanent catheter for chemotherapy. The tumor was 3 inches long , way too big for such a little girl. The entire procedure lasted just under three hours.

Craig and I went to recovery, excited to see our baby girl and ecstatic about the surgery results. Unfortunately, Jordan ended up being in recovery longer than she was in surgery as we didn’t leave to go up to her room until almost 10:00 pm. Jordan had some issues with her respiratory rate, but luckily Dr. Spiteri, her anesthesiologist, was able to address the issue. We were very lucky to have two physicians who were so caring towards our daughter and did excellent jobs treating her today. Jordan is in her room now, with a billion tubes hooked up to her, but seems to be doing well.

We are so thankful that God answered our prayers today with the surgery, but we are now awaiting the results of the tumor pathology that will ultimately dictate Jordan’s treatment plan. We should have the results and begin treatment by next week. Thank you for all the prayers and words of encouragement...they have meant so much to us as we prepared for today. We ask that you please keep our daughter in your prayers during this next week of waiting and planning.

A Good Day

Showing off the stickers she earned from tests and procedures

Practicing walking around the crib with Gram

Jordan slept great and woke up in a fantastic mood on Friday. We will likely in the hospital for awhile so we are trying to make her room a bit more fun by decorating it with pictures/cards and creating a play space with the help of a large mat from Child Life Services. Despite our efforts to entertain her on the play mat, Jordan has the most fun while practicing walking around the room…her crib is especially useful for this as evident in the pictures above.On Friday Jordan had some scans and x-rays to determine the extent of spread to her bones. The tests showed the cancer was only in the bones around her eyes, which we already knew about….this doesn’t really impact her staging/treatment, but it certainly makes Craig and I feel better…the fewer places to worry about, the better. Jordan should get a reprieve from tests/procedures this weekend until we start prepping for the surgery on Sunday afternoon.

Jordan...

Our family received some difficult news about Jordan this week. The doctors are still working to confirm the diagnosis, but it appears she has a form of cancer called neuroblastoma. We received the diagnosis on Wednesday after a bone marrow test showed suspicious cells and a subsequent ultrasound showed a tumor in her adrenal gland. We have been dealing with health issues with Jordan since late in the summer and were even hospitalized a week before Labor Day...we had discussed terrible diseases like leukemia and thalassemia with her physicians...but neuroblastoma had never even been mentioned so it was shocking and overwhelming to hear this scary word associated with our beautiful baby girl.

On Thursday, Jordan had another bone marrow biopsy and CT scan to help stage her disease. These tests confirmed the involvement of the bone marrow as well as revealed the cancer has spread to the bones in her face...possilby explaining the black eyes that have lingered. The spread to the bones makes her cancer stage 4...which sounds scary but I think it mostly just indicates the extent of spread, not necessarily the aggressiveness of the disease. The aggressiveness of the cancer will be identified on the tumor biopsy and we are definitely praying for a lower-risk pathology. What stage 4 does mean for Jordan is that she will definitely have to undergo chemotherapy in addition to surgery.

On Friday we have another bone scan planned, primarily to quantify the extent of the spread to the bone as well as provide a baseline against which to monitor her progress. There doesn't seem to be much else planned until the tumor removal surgery, which is tentatively scheduled for Monday. Fortunately, the surgeon has reviewed the scans and feels it is likely he will be able to remove the whole tumor on Monday, which would definitely be ideal. So until then we will be hanging out at Morristown Memorial and hopefully exploring the room of toys right across the hall.

I'm hoping to use this blog to provide regular updates on Jordan. We are very fortunate to have a wonderfully supportive group of family and friends (Craig's parents are up here and my mom flew in this morning)...if we don't respond to your emails or phone calls right away please know that your words of encouragement and support are so comforting and precious to us.

This is what making it looks like...

"This is what making it looks like...before you've totally made it." This is one of my new favorite quotes from a TV show that is embarrassingly enough one of Craig and my favorites. Looking around our living room cluttered with baby toys, law books, magazines, and a fireplace that has been "in progress" for a year and a half, Craig and I couldn't help but crack up when we heard it.

Anyhow, this past weekend Craig was in San Diego so Jordan and I had a girls weekend. We went to Gymboree but were the only participants in attendance. We still had a good time because Miss Elizabeth is a great teacher and a lot of fun...she is seriously Minnie Mouse incarnate. After class we stopped by the mall for lunch and a short shopping trip. Shopping for baby girl clothes is such a fun part of having a daughter. Jordan got the most adorable pair of blue jean shorts.

Jordan's new favorite game is peek-a-boo. She especially likes to play by lifting her bib over her face. I'm not positive she always intends to initiate the game when she starts playing with her bib, but she gives the best smile when she pulls the bib down and spots Craig or I making a face at her.

Stats from the five month check up today: 25.5 inches, 15 pounds 4 ounces. We got the green light to start yellow/orange fruits and vegetables...fun times ahead!

Hands to the mouth....a favorite pose of Jordan due to teething.

Shag rugs are apparently very interesting for babies.

Jordan is fascinated with my water bottles, but

she is so not getting the concept of a sippy cup yet.

Craig and Jordan debating who will make it to the NBA finals.

Breakfast with Daddy...a new part of the routine.