Sunday, January 17, 2010

Time at Home

Jordan has continued to tolerate round three of chemotherapy very well. Minimal vomiting, only one transfusion, and, most importantly, no fever so no hospitalization!! The no fever/no hospitalization part was particularly helpful since Craig was traveling for work for a few days. Jordan's only issue with this round was an odd reaction during the blood transfusion. For seemingly no reason she suddenly freaked out and required Ativan to calm down. Dr. Fritz wasn't exactly sure what caused the episode but was thinking it was a reaction to Benadryl (which is given prior to all transfusions). This seems questionable to me since Jordan has not previously had such a dramatic reaction to Benadryl, but I guess we will see next time she gets the drug.

Since Jordan was not hospitalized for fever, we have been fortunate to have our longest period at home since Jordan was diagnosed. But while we are spending our nights at home, we are logging a lot of long days at Morristown for clinic visits and scans. Now that I look at the title of this post I'm not sure it is completely accurate because it doesn't feel like we are home that much, but I can't come up with a better title.

As for our time at Morristown, I actually don't mind the clinic visits. Since Jordan's immune system is so compromised, the clinic is basically the only place I can take her...she is entertained with the toys and the nurses and doctors are so nice and friendly. What I do mind are the scans. Since Jordan (or any other young child) is not going to be able to sit still through a scan, she is put under anesthesia for the procedures. The worst part is the extended period during which she cannot eat prior to the anesthesia...and then when there are delays...argh.

Our oncologists seem satisfied with the results of the scans. The bone scan showed no progressive disease. The CT/MRI of the head showed some regression of the swelling that is preventing fluid from draining from Jordan's ears. It also showed expansion in other places, but our oncologists think this is due to the high dose Neupogen that Jordan was on to prepare for the stem cell harvest. The CT of the abdomen confirmed the tumor was completely removed so no further surgery is needed. The CT also showed some changes in the lungs, but the radiologist thinks they are likely due to the anesthesia...Dr. Fritz did mention possibly skipping anesthesia for the next CT and strapping Jordan down to confirm the lung hypothesis...I know the CT is only 10 minutes but that would be a long 10 minutes.

On a side note, I wanted to share a lessson I learned. I first got the results of the bone scan while waiting for Jordan to complete the CT/MRI. The nurse practitioner advised the scan showed few changes and to my non-oncologist self it sounded like Jordan's bone disease wasn't responding. I was a wreck...I had to pick Jordan up from the recovery room and could barely function. A few hours later I received calls from Dr. Gregory and also Dr. Modak at SK who explained the results were not necessarily unexpected as the bone scan does not show active neuroblastoma...the bone scan shows bone damage as well as bone remodeling/repair...a patient can be in remission and still have a bone scan showing activity as the bone takes a long time to heal. So my lesson is to try not to jump to conclusions until I get the whole picture from an's just difficult at times to control my emotions when it comes to this rollercoaster.

Finally agreeing to let a baby ride in the stroller

Helping Daddy organize her mountain of EOB's

The two girls checking out what's going on in the neighborhood

The end of the Cardinals-Packer game was a nail-bitter...
fortunately for us Jordan likes watching football ;)

Wishing Mommy would stop taking pictures after a long day in clinic

Finally realizing we have stairs in our house...time to get a gate!

1 comment:

Erin said...

Love the picture of her head in her hands!! Priceless!