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?!?