Monday, February 22, 2010

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 funny!

Sunday, February 14, 2010

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 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)

Sunday, February 7, 2010


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 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 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?!?

Tuesday, February 2, 2010

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)