Sunday, November 29, 2009

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!

Wednesday, November 25, 2009

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 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.

Monday, November 23, 2009

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.

Saturday, November 21, 2009

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.

Thursday, November 19, 2009


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.