Remembering Jordan

Jordan's funeral will be held on Thursday October 21 at 2:00pm:

Central Presbyterian Church

70 Maple Street

Summit, NJ 07901

In lieu of flowers, donations can be made to:

The Valerie Fund Children's Center at Morristown Memorial Hospital

Goryeb Children's Hospital

Attn: Ann Stocknoff

100 Madison Avenue (#70)

Morristown, NJ 07962

Our Little Angel

Jordan went home to heaven this evening. It was quicker than we anticipated but she was very comfortable, cuddling between Craig and me. Our hearts are broken but we are grateful for the time we had with her and are honored to be her parents.

Our Little Warrior

Since November of last year, our little warrior has faced eight rounds of high-dose chemotherapy, seven neutropenic fevers, surgery, fourteen rounds of radiation to the abdomen, one round of immunotherapy, and one round of Accutane. Most recently, she completed an additional two rounds of medium-dose chemotherapy and eighteen rounds of radiation to the skull at MSKCC. Jordan has endured all of this treatment with a strength and spunk that I find inspiring.

Our plan was to let Jordan recover from the MSKCC treatment and then go for scans late next week, but Jordan has not been feeling well. Over the weekend it seemed like she was fighting a cold...this week it became obvious something else was going on as she was extremely lethargic, sleeping most of the day and not walking. We went to the Morristown clinic yesterday and they determined Jordan had pneumonia as well as excessive sleepiness post skull radiation. They hospitalized her overnight and started Jordan on antibiotics for the pneumonia and steroids for the radiation side effects...the treatment has definitely helped her perk up.

More concerning, though, was one of Jordan's lab values. Jordan's LDH was 2,000 last week and 4,800 this week...the upper limit of normal is 300. A high LDH can mean a lot of things but it in Jordan's case we were worried it meant the neuroblastoma was growing. Our wonderful oncologist at Morristown pulled some strings so Jordan could get a CT scan today and we would not have to wait another week to find out what is going on with our little warrior.

The CT scan showed the neuroblastoma has spread to Jordan's liver. Our doctor at Morristown consulted with our doctor at MSKCC and has determined that Jordan's cancer is no longer curable. Jordan was discharged home and we have an appointment with hospice tomorrow. Our sadness is indescribable but we are focused on enjoying our time with our precious daughter.

Our faith in God and the love and support of our family and friends has given us the strength we have needed for this journey. We are not very good at acknowledging it or responding...most days I can just manage to get us dressed and out the door...but all the emails, posts, texts, calls have meant the world to us. Thank you for supporting our family and for praying for Jordan.

One More Day Left to Vote!

The next 24 hours could mean the difference in getting turbo 3F8 for neuroblastoma into the MSKCC clinic in a year versus who knows when. Jordan and many other NB children would greatly benefit from this treatment. Arms Wide Open Cancer Foundation is running neck and neck with the current 3rd place group, USAction Education Fund, which has organized to get 16 non-profits to come together to create a machine that is trying to take all the money in every category in the Pepsi Refresh contest.

Please take one least day to vote...feel free to pass on to others who may be able to vote as well!

There are 3 ways to vote in the final 24 hours:
1. Vote via text: dial 73774 and then enter 102653 in the body of the text
2. Vote via internet: www.refresheverything.com/armswideopenchildhoodcancerfoundation (Make sure you click on "Vote for this idea" after you hear the Pepsi can opening and that the vote counter in the lower left goes from 10 to 9 meaning you cast your vote for Arms Wide Open). Plus you can vote with all your e-mails, personal and work.
3. Vote via Facebook : when you are online look for how to download the Facebook app, then vote on Facebook with your app

A win would be a great way to end September which is National Childhood Cancer Awareness Month!

Vote, Vote, Vote!

Today in the MSKCC clinic I briefly met Dena Sherwood, the woman who runs the Arms Wide Open Childhood Cancer Foundation. It was inspiring to meet someone who has been in the same battle as us and still found the energy to raise money (a lot!) for all the neuroblastoma warriors. Dena shared that Arms Wide Open has already raised $100,000 this year for MSKCC and that they are hoping to win the Pepsi Refresh Challenge in order to bring the annual total to $350,000. The Pepsi grant would be used by MSKCC for the turbo 3F8 research project. Turbo 3F8 is a super strong version of the antibody therapy Jordan attempted this past spring. Antibody therapy is a crucial treatment option for neuroblastoma and does not have the long-term side effects that come with so many of the other therapies. Dena shared that turbo 3F8 has already been developed...MSKCC just needs $600,000 to move it on to production. Production takes six months and then turbo 3F8 will be available to children in the clinic. This was wonderful to hear...but also a little sad. It is heartbreaking to know that the science is there but that money is preventing this treatment from being available.

Arms Wide Open is currently in second plase in the Pepsi refresh challenge. The top two vote recipients win a $250,000 grant so they need to maintain their current ranking until voting ends at the end of the month. You can vote for Arms Wide Open each day by texting 73774 and entering the code 102653. You can also visit the website below and vote online.

WWW.REFRESHEVERYTHING.COM/ARMSWIDEOPENCHILDHOODCANCERFOUNDATION

Another Update and Another Request

The results of Jordan's head MRI showed disease progression in lines with what the doctors expected to see considering the swollen eye issue. One of the doctors even thought there could be an infection component that was responsible for part of the swelling and MRI findings. Taking that into consideration, Jordan was hospitalized on Wednesday at MSKCC to start IV antibiotics. While inpatient, she continued with her course of medium-dose chemotherapy and started radiation.

Fortunately, Jordan's eye responded fairly quickly to either the chemotherapy or antibiotics and we could see 3/4 of her eye by Friday morning. Jordan was discharged Friday evening, making the two days in the hospital our shortest stay ever. This was fantastic news as being hospitalized in NYC is not as convenient as being hospitalized in Morristown...plus Jordan gets rock-star treatment at Morristown and one can get used to such spoiling. :) A big thanks to Mom-Mom who navigated NJ and NYC public transportation to come into the city each day to help out at the hospital.

It seems like lately it has been difficult to string together more than one piece of positive news...right as we were being discharged from the hospital I found out Jordan's bone marrow test showed evidence of neuroblastoma. On Monday we were stunned to learn the bone marrow involvement was extensive. This was crushing as it means Jordan's cancer has progressed despite the multiple rounds of high-dose chemotherapy that she completed this summer.

There was some debate between our oncologist the radiation oncologist on the treatment plan going forward. For now, we are going to continue with the once daily radiation treatments but the radiation oncologist is increasing the length of therapy to ensure the skull bones are adequately treated. Radiation will continue until October 5 (is it really almost October?!?). Jordan is due for her next round on chemotherapy on September 27 and will continue with the medium-dose chemotherapy since she will still be in the process of completing radiation. For now, all treatments are at MSKCC.

So there is the update and here is the request....Pepsi is sponsoring a grant contest providing $250,000 to the top two vote recipients. Arms Wide Open is a group competing for Dr. Cheung's research lab at MSKCC. Dr. Cheung invented the 3F8 antibody treatment that Jordan underwent this spring. His lab is working to find ways to make the antibodies stronger as well as to bypass the resistance issue (which caused problems for Jordan). You can vote for Arms Wide Open by texting 73774 and entering the code 102653. You can also visit the website below and vote online. Voting runs through the end of September, and you can text and vote online one time each day. Arms Wide Open is in fourth place so they only need to move two more spots to win.

WWW.REFRESHEVERYTHING.COM/ARMSWIDEOPENCHILDHOODCANCERFOUNDATION

Jordan hanging out on the hospital bed...she's become very good at smiling for the camera!

Playing on her slide

Who's the cool kid?!?!

An Update and a Request

So here is an update of what has happened since Jordan relapsed...

We originally were told Jordan's relapse was isolated to a few spots on her skull that had been impacted at diagnosis. A bit later we found out there was bone marrow involvement as well. Jordan did two rounds of high-dose cyclophosphamide, topotecan, and vincristine in the hospital at Morristown...and had fever hospitalizations following each round (one lasting almost two weeks...brutal). Jordan handled the chemotherapy fairly well but started to experience some treatment side effects...blood in the urine and elevated kidney tests. These side effects seem to wax and wane a bit but are not a problem at the present.

The next set of scans at the end of July showed the bone marrow cleared but the skull spots were unchanged. Jordan moved on to a super-high-dose chemotherapy regimen of ifosfamide, carboplatin, and etoposide at Morristown. Again, Jordan had a subsequent hospitalization for fever but tolerated the chemotherapy fairly well with minor treatment side effects...low phosphorus levels so she is on an oral supplement.

Jordan started scans last week and the preliminary results showed the skull spots still unchanged. We will not get the bone marrow results until later this week and the MRI is scheduled for tomorrow. The plan for this week was to start a medium-dose chemotherapy regimen at MSKCC and make plans for radiation to the stubborn skull spots.

Craig and I were incredibly disappointed that all the chemotherapy had failed to treat the skull spots but were determined to enjoy the Labor Day weekend with Jordan and Craig's parents at the shore. And we did a very good job of enjoying and relaxing until Jordan woke up with a swollen eye yesterday. The swelling went down within a few hours of waking and did not seem to be bothering or impacting her so we decided to hold off on any ER visits.

This morning we were terrified when Jordan woke up with a completely swollen shut and puffy eye. We met with the doctors at MSKCC and the presumption is that the cancer is causing the swelling. Jordan's type of neuroblastoma is so aggressive that it is possible to have visible signs of progression even though the scans five days ago showed stable disease. They also said a small amount of growth in the skull can cause a large amount of inflammation.

Jordan started irinotecan and temozolamide chemotherapy today at MSKCC and will continue it through Saturday. The MRI is still on for tomorrow and were fortunate to get an appointment for the radiation planning session for tomorrow as well...this will allow Jordan to start the radiation treatments on Thursday. All of these treatments will be done on an outpatient basis...yea for no hospitalizations.

So here is my request...

Please pray for Jordan. I am praying that the MRI shows minimal progression and I am praying that the combination of radiation and chemotherapy will heal her cancer. I am praying for Jordan to have the strength to fight this disease and for Craig and I to support her the best we can. The radiation doctor feels the radiation has a strong likelihood of effectively treating the disease...which is encouraging because we really need this to work.

And a quick apology too...

I am sorry that I have not done a better job of updating the blog. Jordan is so fortunate to have people who care about her enough to read this blog and I should do a better job of keeping it current. This relapse has been difficult to handle and the thought of writing about it has been intimidating but we are going to try to do better.

And Jordan?

Despite everything she is doing wonderfully. She laughs and plays and dances and reads and is simply a joy to be around.

Back At It

Jordan was admitted to Morristown Thursday for a four day course of chemotherapy. This cycle contained Cytoxan, topotecan, and vincristine. Some of these drugs she has had before, one was new. On Thursday Jordan did fantastic...eating and playing well, no vomiting....I started to wonder if the pharmacy had sent the correct drugs. By Friday afternoon the effects of chemotherapy began to hit Jordan and she had some vomiting and loss of appetite. On Saturday Jordan's red blood cell count had dropped low enough that she requried a blood transfusion.

Saturday night Jordan spiked a fever of 101. At this point we were all looking forward to going home the next day, but I was worried the fever would mean we would have to stay in the hospital for monitoring after the chemotherapy was completed. Fortunately, Jordan's white blood cells were not too low and she looked relatively healthy so we were able to leave after a dose of IV antibiotics.

Pop Pop was with us for most of this hospitalization and we were very thankful for his help! Pop Pop got Jordan a life-sized Dora the Explorer balloon...which was a lot of fun until Jordan started to try some wrestling moves on Dora. We were also forutnate to have visits from my friend Joyce and Aunt Suzette...and we waved to Mom Mom, Molly, anad Brandi out the window as they were recovering from infections and too young to visit.

While we were in the hospital we were very excited and relieved to learn Jordan's bone marrow biopsies came back clear. This means the two spots in her skull are the only two places where the neuroblastoma appears to be active. We are hopeful this means Jordan's relapse is more an undertreatment issue rather than spread of disease. We also learned that Jordan's course of radiation will likely occur after the second round of high-dose chemotherapy.

Most days I feel a bit in a daze and Jordan's relapse doesn't seem like reality. I keep thinking to myself that I can't believe we are back here so soon...back to the frequent hospitalizations, the watching for fever, the long transfusions, the daily shots... I am sad that the swimming lessons, play dates, and trips to the shore that we had planned for Jordan will have to be put on hold. But I am extrememely grateful that Jordan is doing okay and that the relapse and chemotherapy have not dampened her spunk or determination.

Relapse

Jordan had her first set of follow-up scans this week. We were very disappointed to learn Jordan has relapsed. The MIBG and MRI scans show two spots on her skull. It appears they are the same spots she had on her skull at diagnosis. This could be good, indicating the cancer has not spread to new areas. We will not get the results of the bone marrow biopsy until later this week; we are praying that the bone marrow is clear.

Our plan is to start high-dose chemotherapy tomorrow at Morristown. Jordan will be an inpatient for four days to get the three medications for this regimen. We will do two courses of this regimen followed by three to five courses of a lower dose regimen. Fortunately, the lower-dose chemotherapy will be done on an outpatient basis. Jordan will also have a course of radiation to her skull at MSKCC, likely between the first and second rounds of chemotherapy. Dr. Kushner advised MSKCC has a lot of experience radiating the skull without negatively impacting the brain.

The relapse rate with neuroblastoma is so high that we can't say we are completely surprised Jordan relapsed, we just did not expect it to be so soon. We are heartbroken that our sweet baby is re-entering the world of active treatment. Dr. Kushner seems very optimistic that we will be able to get Jordan back to remission quickly. He also said Jordan looks great and her counts are good, both positive signs. We are praying that in five years we look back and can say that as far as relapses go, Jordan's wasn't too bad.

The Roller Coaster

I'm a bit behind on blog posts. This is 75% due to us really enjoying being able to take Jordan out into public again and 25% due to me returning to work part-time and feeling lazy in the evenings. But I do have several posts half done so hopefully I will get some more energy.

The past two weeks have been a bit of a roller coaster for our family. On Monday two weeks ago Craig took Jordan to MSKCC for her second round of antibody therapy. I prepared Craig for what to expect with this difficult, painful treatment and his father was accompanying him for the day. When it came time for the infusion Monday morning nothing happened...Jordan completely slept through the treatment. While it is a bit sick to hope your child has pain, not having pain can indicate a patient has developed resistance to the antibodies. Four cycles of antibodies is considered the necessary minimum and Jordan has only completed one. With antibody therapy being one of the best ways to prevent relapse, Craig and I were quite disheartened at the prospect of Jordan already being resistant.

On Tuesday I went to clinic with Jordan feeling a fair amount of anxiety around whether or not she would experience pain during the infusion...but we didn't get to find out. Right when we arrived Jordan started moaning and breathing very fast. When checked, her oxygen saturation was only in the high 80's. Six breathing treatments later Jordan was still requiring oxygen to keep her saturation in the 90's. Dr. Kushner decided to hold the antibody therapy for the day and admit her to the hospital for observation.

Unfortunately, Jordan's respiratory status continued to deteriorate rapidly throughout the day. Jordan responded during treatments but her breathing and oxygen tanked as soon as they were over. Her entire little body was heaving with each breath...the doctor was worried that at some point she would run out of energy. By the end of the day Jordan required the BIPAP machine to breath...BIPAP provides pressurized oxygen to make sure the oxygen gets into the lungs. We were also transferred across the street to the PICU at Cornell in case Jordan continued to deteriorate and needed to be put on a respirator.

Tuesday was definitely a rough day...it was terrifying how Jordan got so sick so quickly. Thankfully she began to improve on Wednesday. The PICU attending diagnosed this episode as a viral respiratory infection/asthma attack. By Thursday Jordan was still on oxygen but off the BIPAP machine and her biggest issue was repeated vomiting from all the mucus in her lungs. Since her breathing was much improved, Jordan was transferred back to MSKCC Thursday evening.

Jordan was hospitalized at MSKCC through Sunday evening, which was about a day longer than we were hoping. The hospital team did not seem to be in a hurry to send Jordan home even though she seemed back to normal to us. If a child is walking laps around the nurses station, trying to scale the crib like it's a mountain, and not requiring any treatments that couldn't be done at home, I would think that child is ready to be discharged...but what do I know. :)

Our plan for this past week was to allow Jordan a little time to recuperate and then start radiation on Thursday. The radiation appointments were previously scheduled so Dr. Kushner felt it was best to move forward with them first before returning to the antibody therapy. Unfortunately, things changed on Wednesday. We found out that the radiation was being bumped until Friday (not a big deal)....and that a blood test from the hospitalization showed Jordan does have resistance to the antibody therapy (kinda a big deal).

We are very, very disappointed that Jordan has already developed resistance. The possibility of relapse is constantly on our mind and not being able to go forward with antibody therapy is not helping to alleviate our anxiety. The resistance can wax and wain so Jordan will have another blood test in a few weeks and we are praying that the resistance will be diminished at that point.

Lounging on the IV pole...Jordan turns everything into a chair

Exploring under the crib

Watching the Peanut Butter Stomp on Yo Gabba Gabba

Jordan's interpretation of the Peanut Butter Stomp....there's a lot of thought going into this dance

Admiring her new harmonica

The harmonica came from Jack, an extremely nice nursing tech who wears a cowboy hat and western shirt each day

First Round of Antibodies

We started the next phase of Jordan's treatment, immunotherapy, last week. In order to prepare Jordan, we had to start Leukine shots the week before last. Leukine is a medication that increases Jordan's white blood cells to help make the antibody therapy more effective. Because Leukine is not FDA-approved for this use, we had to go through the appeal process with Craig's insurance. (What is FDA-approved for neuroblastoma? Umm, nothing...) While waiting for the appeal approval so we could fill the prescription, we had take Jordan to MSKCC each day to receive Leukine. Lots of driving and traffic for a shot that took all of 10 seconds to administer. Fortunately, all was in order by the weekend so I could start administering the shots at home.

On a side note, we ended up at MSKCC for a Leukine shot on Saint Patrick's Day. As the hospital is only five blocks from the parade route, we decided to take advantage of being in the city and swung by the parade for a bit. I think my expectations were a bit high (a mini-Thanksgiving day parade?!?), but Jordan seemed to enjoy the horses and the drums....but she was probably equally interested in the golden retriever sitting next to us wearing a green sequined bow tie.

Immunotherapy consists of a 30 minute infusion of the 3F8 antibody each day for one week. The medical team at MSKCC cautioned us many times about the intense pain associated with antibody therapy and I was hopeful they were somewhat overstating it...unfortunately they were not. Jordan's pain started five minutes into the infusion and the next twenty-five minutes seemed like an eternity. Jordan was red and sweating profusely, her stomach was rock hard, and she was screaming and writhing around in my arms...it was horrible and definitely the hardest thing I have seen Jordan endure. I remember feeling so sad and so angry...angry that this painful treatment is the best option for preventing relapse and sad that it is not always successful.

MSKCC has a team of nurses dedicated to 3F8 and they were right there with us, administering pain medications and antihistamines, monitoring Jordan's respiratory and heart rates. There was also a dance therapist, Suzi, to help Jordan and me cope...not by dancing (although that might have made a better story) but by physically helping me rock Jordan in my arms and sing to her. I'm not typically into the touchy-feely therapist thing but Suzi was so key in helping me care for Jordan.

Jordan received so much Dilaudid for her pain that she was completely knocked out the rest of the day. When we got home she would sit up and attempt to play with a toy for about 30 seconds and then put her head back in my lap.

Fortunately, the infusions the rest of the week were not quite as traumatic. They were still extremely painful for Jordan but the nurses said the first day is always the worst...plus I knew what to expect. Jordan even started tolerating the pain medications a little better and was waking up by early evening, ready to play for a bit.

Despite the difficulties, I am thankful Jordan is able to have this treatment and grateful that we have this first cycle of antibodies completed. Jordan will continue with the antibody therapy every four weeks for three more cycles. After that the frequency decreases to every eight weeks. Antibody therapy continues for two years or until Jordan mounts an immune reaction to the antibodies (a HAMA response). We are praying that Jordan will be able to continue for a long, long time so that she is able to get the maximum benefit from this treatment.

Pictures from the St. Patrick's Day Parade

Complete Remission

Starting last Friday after Jordan's MIBG scan and bone marrow biopsies, we began receiving small pieces of good news. The CT scan was clear...the MIBG scan preliminarily looked good but we needed the final results... Today all the pieces of the puzzle came together and we found out Jordan is in complete remission. The absolute best news that we could have received. I feel joyful and grateful...so thankful to God for this wonderful, fantastic news...so thankful to all our friends and family who have been praying on Jordan's behalf. I also feel humbled. I know that there are parents of children with neuroblastoma who will never get this news and never get to experience this joy. While I celebrate Jordan's health, I am going to keep praying for all those children who are not in remission.


In addition to all the happy emotions, I'm also feeling scared...honestly, more scared than I thought I would be at this point. Jordan starts the next phase of treatment, immunotherapy, on Monday. Jordan will be receiving IV infusions of 3F8, an investigational monoclonal antibody, at MSKCC. 3F8 is investigational because it is not FDA approved, but it is one of the standards of care for neuroblastoma. The idea behind 3F8 is that it will find any residual neuroblastoma disease too small to show up on scans and destroy it to prevent relapse. The main side effect of 3F8 is pain...serious, intense nerve pain that isn't even relieved by morphine or Dilaudid. Patients also have allergic reactions to 3F8...hives and rashes, some even have difficulty breathing. Jordan had the typical issues with chemotherapy....vomiting, diarrhea, fever...but mostly she tolerated it very well. I am really nervous about how Jordan will tolerate this new treatment.


I am also scared about relapse. I know, I know...Jordan's first day in remission and I'm already worried about relapse. It's just that even with the best treatment, the relapse rate is still around 60% and getting into a second remission is much, much harder than getting into the first. Jordan will continue to get scans every three months to closely monitor for relapse. I just hope that relapse is the fear that Craig and I will live with every day but never a reality that Jordan has to face.


So thank you again for all your kind words and thoughts and prayers. They mean so much to us and provide us so much strength. And I ask that you continue to keep Jordan in your prayers as she moves into the next phase of treatment.

Waiting...

I don't like suspense. If Texas doesn't have a big lead going into the fourth quarter of a football game, I have a hard time watching...and that's just a silly football game. Wondering what is going on in Jordan's body and waiting for the results is creating a palpable anxiety. As much as I try to distract myself, I have a hard time focusing on anything else...I doubt hardly a minute passes without me thinking about it. My stomach is twisted and my shoulders are knotted. I am way more of a spaz than usual. I should (and hopefully will) get more comfortable waiting on the scans and results because Jordan will be having them every three months for quite awhile.

When Jordan was originally diagnosed, neuroblastoma was not even in the realm of possibilities I was worried about. Hearing that word for the first time....such a scary, ugly word...it was shocking. To try and prepare for the results of these scans, I made myself think of all the options and what they would mean for Jordan and how it would feel to hear them, the elation or the disappointment...trying to lessen any shock value. It's not that I'm not thinking positively...in a lot of ways I think I am a little foolishly optimistic...I'm just trying to prepare myself and lessen the power of the suspense.

In my mind I sometimes think there are two types of results, good and bad....no evidence of disease (NED, remission in neuroblastoma world) or disease. But I have read enough stories to know that there a lot of different possibilities and that each child's case is truly unique. I have read stories of children that were NED after induction but relapsed three months later....I have read stories of children that took a loooong time to get to NED but years later are still doing well. I would, of course, love for Jordan to be NED but even if she needs more chemo or some other treatment, it doesn't mean she won't get to NED at some point.

There was an older neuroblastoma patient, a man in his early twenties who relapsed after more than a decade as NED who said he didn't worry over the results of his scans...his worry would not change what was going on inside his body and he relied on God to help him through whatever the scans revealed. I didn't state this nearly as eloquently as he did but I think of his bravery often when the worry gets consuming. Another friend, both of whose parents have battled cancer, recommended repeating a bible verse over and over during times filled with anxiety. Today I was focusing on John 14:1, "Do not let your hearts be troubled. Trust in God; trust also in me." And then there is my precious child who really has no idea what is going on and was just excited to get to ride the trike in the playroom and look at the aquarium....she is not worried, she just wants to play and cuddle and I try to focus on that.

Today Jordan had the CT scan and MIBG injection. We had minor trauma when Jordan refused to drink the CT contrast solution and had to be pinned down and forced to drink it, one ml at a time....but at least she did not have to get a tube down her nose. Despite this and not getting to eat until almost 2:00, Jordan did fantastic. It was a very long day in NYC and we have another tomorrow for the MIBG scan and bone marrow biopsies. And then more waiting for the results next week...

Yet Another Fever

The last time Jordan had this regimen of chemotherapy (round three) she did not get a fever...that has been the only round after which she has been fever free. I was hopeful, very hopeful. But in clinic last Wednesday Jordan's ANC was 10....same story, different day. She got a fever of 101 Thursday evening and we ended up back in the hospital. Bravo to Jordan on the timing because we arrived just as the snow storm was gearing up.

Jordan's chest x-ray did not show a pneumonia but she seemed to have some sort of respiratory infection. Jordan was definitely feeling pretty punky on Friday. It was probably the easiest day we have had in the hospital because all she wanted to do was lay in bed and watch movies...my kind of day. By Saturday Jordan was feeling better and wanting to explore but some of her oxygen saturation tests were low (mid 80's to low 90's). Jordan had to have a continuous oxygen monitor attached to her toe, not necessarily conducive to a toddler wanting to practice walking. Ultimately all issues resolved and we were discharged late Monday night.

As to the ongoing bruise/blood clot/partially collapsed lung dilemma...the chest x-ray showed that the spot had completely cleared. One less thing to worry about! The pulmonologist also said Jordan's reactive airway disease seemed improved and that we could taper the respiratory medications in hopes of being completely off them in a month.

We also scheduled the appointments for scans at MSKCC on March 11-12. Jordan will have bone marrow biopsies, CT scan, and MIBG scan to determine her response to the induction phase of chemotherapy. These results will also dictate her next phase of treatment. We are praying for a complete response and would love any extra prayers and positive thoughts for Jordan these next few weeks.

Our exciting news this past weekend...the return of grandparents! My mom arrived on Sunday to start a three week visit. We are so lucky to have her with us as we figure out the next steps for Jordan and our family. And Craig's parents returned from a vacation in Florida and stopped by for a visit on Sunday. Jordan was a bit overwhelmed to wake up from a nap and have three grandparents in the room staring down at her but deep down I think she was pretty excited to see them all. :)

Bad Mommy forgot to take pictures this hospitalization so I just snapped this today...I love how she thinks the bottom step is her own little chair!

Round Five

Last week Jordan completed round five of chemotherapy, the last scheduled round of the induction phase of treatment. This round was the same medications as round three...only a few hours of infusions a day but in the hospital all week (Monday-Friday). Surprisingly, this round was the hardest on Jordan since the first round. She had more vomiting than she has ever had before, partially induced by the antibiotic she was taking to treat the C. diff infection. And her blood counts started dropping while she was still under going treatment...not necessarily surprising considering the amount of chemotherapy she has received. Jordan also contracted some sort of gastrointestinal bug in the hospital. It was a new bug, not C. diff as follow up tests for that infection were negative. Between the vomiting, diarrhea, and copious amounts of urine stimulated by the high rate of IV fluids, Jordan was tearing through outfits and bedding. I stopped counting the day we got to outfit number five by noon.

While we were in the hospital, Jordan was examined again by the pulmonologist. He still feels the spot on Jordan's lung is a partial collapse due to reactive airway disease and wants her to continue the inhaled steroid and albuterol. Conversely, our oncologists feel strongly the spot is a bruise from an IV line and do not think Jordan needs the respiratory treatments. (In further discussions they called it a bruise rather than blood clot which definitely sounds less ominous.) So we are somewhat in limbo regarding the lung issue...Craig and I do not really see any benefit from the respiratory treatments but Jordan sometimes wheezes during examinations so what do we know.

My favorite story from this hospitalization....Jordan is not a big fan of the nebulizer. She will sit still for about half of the treatment and then she gets very antsy and tries to ditch the mask. One day the respiratory therapist happened to be an attractive young man. Not only was Jordan a complete angel during the treatment, she tried to help hold the mask. My 14 month old daughter, the flirt...

Jordan loves the thermometer and the techs are nice enough to let her play with one...check out Elmo and Grover in each hand helping out

Mesmerized by an Elmo video

See the green toothbrush in Jordan's left hand...she fell asleep brushing her teeth

Standing in the bed, so against the rules

Sitting now, much better :)

Mouth open and saying ahhhh...I guess to help catch the albuterol...so funny!

Change of Plans

Jordan and I showed up at clinic Monday morning prepared for a week in the hospital for round five of chemotherapy. We started with another chest x-ray because Dr. Fritz wanted to make sure the pneumonia had cleared. It looked like the pneumonia was almost gone but there was a spot in another area of Jordan's lung. The question was if this other spot was another pneumonia (maybe due to a fungus or some other organism the antibiotics are not covering) or if it was a partially collapsed lung (possibly due to reactive airway disease/asthma).

The pulmonologist (now her fifth different specialist) examined Jordan while we were in clinic and said her presentation is consistent with reactive airway disease (RAD). RAD sounds a lot like asthma and it seems like a lot of kids get tagged with this diagnosis. The treatment is basically the same as asthma...inhaled steroids, nebulized albuterol, and chest PT. The way the nurse explained the chest PT I am supposed to pound really hard on Jordan's chest to loosen the mucus so the lungs can re-expand...and it would best if I could do this with her tilted somewhat upside down. Um yea, Jordan is really going to love me holding her upside down and beating on her.

Despite the RAD diagnosis, our oncologists also wanted to do a CT to confirm this is not another pneumonia. Craig and I were concerned this lung spot could be spread of the neuroblastoma and when they first mentioned a CT I got very nervous. Dr. Mahmoud and Dr. Miller assured me (several times!) that they were concerned about infection/asthma and not the cancer and I really do believe them... It is just difficult not to attribute every little symptom to the cancer.

Jordan did the CT on Thursday...without anesthesia this time as it can sometimes create spots on the scan. The scan was surprisingly short which was fortunate since Jordan freaked out the entire time. No fungal infection, no pneumonia, no partially collapsed lung. It looks like the temporary line used at MSKCC for the stem cell harvest created some irritation and a blood clot. The plan is to do another CT in a few weeks and hopefully the clot will have dissolved. If not, MSKCC will have to examine and biopsy. The oncologists do not seem too concerned about this clot but honestly, it is making us a bit nervous. I just do not like having additional things to worry about.

So no chemotherapy this week while our oncologists investigated the lung issues. We were a bit disappointed because as difficult as chemotherapy can be, it is great to feel like we are actively killing this horrible disease. But our family did get to celebrate birthday week at home together and it was fantastic. Thanks to all our family and friends for the birthday wishes and treats!!

Check out the leg warmers...how fun are little girl clothes?!?

We tried some music time but on this day Jordan was more interested in the CD cover...
and the power button....

and eating the bells...

Happy Birthday Mommy!

Happy Birthday Daddy! (Jordan isn't asleep...just wasn't feeling photogenic)

Pnemonia...bleh...

Jordan's blood work showed she had an ANC of 0 on Monday. With no infection fighting cells it was likely a matter of time before she got a fever and we ended up in the hospital, 99% of kids do after this course of chemotherapy...but we had made it through the weekend and I really thought Jordan would be the 1% that didn't get a fever...optimistic or foolish?!?

Anyhow, Jordan did get a fever of 101 of Tuesday evening so we headed back to Morristown. At least it wasn't in the middle of the night this time. The chest x-ray in the ER showed Jordan had pneumonia which sounds more dramatic than it really was. Her oxygen saturation was great and she did not seem that sick so the pneumonia diagnosis really only meant Jordan needed one additional antibiotic.

Jordan vomited some on Wednesday and seemed a bit ill but by Thursday was back to normal. The plan was to go home Friday...until then the wheels fell off Friday morning. It started with the nurse hearing a wheeze in Jordan's lung...which necessitated an albuterol nebulizer treatment...which stirred up mucus and caused some blockage...which dropped Jordan's oxygen saturation into the 80's (needs to be 92)...which required deep suction = HORRIBLE. Jordan did much better after the suction but Dr. Miller decided to keep Jordan on around-the-clock nebulizer treatments and also keep her in the hospital overnight to monitor Jordan's oxygen while she was sleeping.

Friday afternoon we also found out Jordan has a C. diff infection. C. diff causes diarrhea and is not uncommon in patients with multiple hospitalizations or with compromised immune systems...so it was probably a matter of time before Jordan got this infection. Luckily, Jordan is not experiencing diarrhea but she did start another antibiotic to treat the C. diff. Unfortunately, we have to be isolated to protect the other cancer patients when we are in the clinic or hospital for the two weeks of treatment plus the following month...so no more playroom for quite awhile. :(

All was good overnight Friday so Dr. Miller came in very early to discharge us Saturday morning. I love Dr. Miller and am very appreciative that she wanted to help us maximize our time at home...especially since we are just getting a quick weekend prior to starting round five on Monday. With the added treatments for the pneumonia and C. diff (four meds, twelve doses per day), I feel like we spent much of our weekend chasing Jordan around with medicines and nebulizers but it was great to be home. We also got a visit from Maria and Kristy, two of Craig's friends, who helped Craig and I start our week of birthday celebrations with a fantastic cake.

Helping the toy move the balls down the chute

Playing with the helicopter in the hospital bed

Home and happy to see Nola...lucky dog...Jordan only smiles this big for Nola

Kristy, Craig, Jordan, and Maria

The Colts and the Longhorns, two second place finishes this year...what are the chances?!?

Mommy Friends

If I tried to blog about all the fabulous friends and family who have been so supportive to us since Jordan's diagnosis, it would be a really, really long blog. But it just so happens that I got a night out (and a picture thanks to Jenn) with a few of my friends last weekend.

A year ago, Jordan and I joined a mommy group at our local post-partum boutique...mainly because we were looking to get out of the house and I wasn't sure where to take a newborn. Lucky for us because we met a great group of mommies with babies all the same age as Jordan. More than any parenting website or book (and I have quite the library), these women were an invaluable source of knowledge and camaraderie to me as a new mom, especially since my mom and best friend are so far away. And this group has been a continued source of support and friendship and encouragement since Jordan's diagnosis. Jordan and I are very fortunate to count these women as our friends.

The night out was a fantastic treat and no, we didn't drink all the bottles of wine...did not even come close ;)

Jean (mommy to Emilia), Jenn (mommy to Maddie), Heather (mommy to Hudson), Alex (mommy to Jack), and Denise (mommy to Henry)

Round Four

Round four of chemotherapy did not start until Friday due to the hecticness of our schedule at MSKCC. This slight delay afforded Craig and I the chance to celebrate our fourth wedding anniversary with a dinner at home rather than in the hospital. Since we have spent all recent holidays and special occasions at Morristown, this was a nice change.

The drugs in round four are the same as the ones in round one/two and necessitate Jordan to be hooked up to a continuous infusion for three days. Jordan was very uncomfortable on Saturday and required a couple of doses of Ativan, but she seemed to feel better by Sunday. During this stay we were lucky to get visits from PopPop, MomMom, Amy, Jane, and Helen. And thank you Helen for helping teach Jordan how to shake her head no...that has been a very useful skill this week. :)

We did have a bit of drama on Sunday. A couple of hours after they changed the chemotherapy IV bag Craig noticed red liquid dripping down the IV pole and forming a pond next to the bed. Appearantly the pharmacy had pierced the bag while preparing the doxorubicin infusion. Of all the IV bags to pierce, the doxorubicin was probably the worst option. Doxorubicin is a vesicant...meaning that is causes nasty blistering if it touches the skin. This drug is the reason the nurses are constantly checking the placement of Jordan's IV line during the three day infusion. Anyhow, thankfully Craig noticed the leak before any got on Jordan or us!

After finishing the chemotherapy infusion and getting a blood transfusion, Jordan and I made it home late Monday night. I found out that 99% of kids end up in the hospital with fever after this regimen of chemotherapy...which makes sense as Jordan had to be hospitalized for fevers after round one and two...but so far so good. Jordan had a clinic visit today and her counts were all still decent so maybe we will make it through the weekend at home.

We also got two pieces of good news this week. The first is that Jordan's bone marrow biopsies from last week at MSKCC showed no neuroblatoma cells. This leads me to think that the stem cells that were harvested are good, clean cells...which is great in case we should need to use them. We are so thankful that Jordan has had two clean bone marrow biopsies and we pray that her bone is responding just as well.

Our second piece of good news is that my brother's family welcomed a healthy baby boy, Connor Matthew, on Sunday. We are ecstatic about this new addition and glad that Valerie and Connor are doing well. Bradley and Valerie have been so supportive these past few months and Jordan is very lucky to have them in her corner. Congratulations -- we can't wait to meet Connor!

MomMom and Amy

Jordan loved this new addition to the Morristown playroom

Elmo and the stroller...two of Jordan's favorite toys

Jordan crawling into the dishwasher while I'm telling her no...that's right, the only time my child smiles for the camera is when she is actively defying me :)

Jordan had a tiny mohawk all day

Playing at the Morristown oncology clinic

Jordan's favorite toy at the oncology clinic is this bear that sings Come On Get Happy...her love for this bear is almost equal her love for Elmo

Jordan sitting in Nola's toy basket

Tyler and baby Connor...two of my favorite little boys!