Thursday, January 28, 2010

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!

Thursday, January 21, 2010

Stem Cell Harvest at MSKCC

Jordan had her stem cell havest at MSKCC in NYC this week. (FYI, in previous posts I abbreviated Sloan-Kettering as SK but the official abbreviation is MSKCC so I'm going to get on board.) While we had another week of long days with the addition of long commutes, the harvest itself wasn't very difficult. The roughest part for Jordan was getting the temporary harvest IV line (the implanted port she has for chemo only has one line and the harvest requires a port with two lines). The procedure to get the line was done under anesthesia in about ten was the two and a half hour delay (and two and a half extra hours of no food) that was difficult.

Once the line was in, Jordan was hooked up to the harvest machine in the blood bank. The process resembled donating blood...Jordan's blood cycled through the harvest machine and the stem cells were removed and stored in the blood bank. Jordan was a champ during the two hour harvest sessions....she was very content napping or watching movies so it made the process much easier for the nurse and for me!

Jordan's collection goal was 7 million stem cells. On Monday, they collected 5.1 million cells so we had to go back for a second day. On Tuesday, they collected 3.8 million cells so she easily met her goal. And on Thursday we made one more trip to the city to remove the harvest IV line and to get a bone marrow biopsy to confirm the status of her bone marrow at the time of the harvest. After all these trips I feel like a pro navigating through the city...which is saying a lot considering my horrendous driving skills.

Being at MSKCC all week made me miss our clinic at Morristown. The staff at Morristown treat Jordan like a rock star and they make things so easy for me. When we walk in the door, everyone chimes in with hellos and asks how Jordan is doing. When I call with questions, if no one is available to talk to me right then I get a call back within an hour (and often from a doctor no less). MSKCC is providing Jordan with great medical care...we just are not getting the hand holding we have become accustomed to...but I think we will get more comfortable as we spend more time there and get familiar with their processes.

The weekend before the harvest the Groarke family drove up to entertain Jordan in our front lawn since she still has to be sequestered from other children. Jordan loved looking out the window at cousins Molly, Emily, and Brandi and was particularly entertained watching Max run around with Nola.

Can you see the harvest IV line taped up on the right side of her body with the blue ends hanging equal with her belly button? Jordan's curious hands thought it was the most convenient toy for her to play with all week.

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!

Wednesday, January 6, 2010

Moving in the Right Direction

Round three of chemo was thankfully uneventful. In a lot of ways, I thought round three was easier than round one/two...Jordan's infusions were only for three or four hours per day instead of around the clock plus the appetite suppression and vomiting seemed less (although cisplatin is known for delayed reactions so we will see how the week goes). The only bad thing about round three was that it required five days in the hospital instead of three, and I think both Jordan and I were going stir-crazy by the end of the stay. Jordan is wanting to constantly cruise and being hooked up to IV fluids somewhat impedes that...but not completely as the pictures below show. During this hospitalization, we were fortunate to get visits from Aunt Cheryl, Aunt Suzette, Uncle Joe, and we also got a good luck New Year's dinner from MomMom and PopPop.

And now for the big news...We received the results of the bone marrow biopsies earlier this week and they showed no neuroblastoma cells!! So it appears that we are moving in the right direction as Jordan went from having 70% of her bone marrow biopsies filled with neuroblastoma to 0%. Our oncologists did warn us that this doesn't mean her body is rid of the cancer. Neuroblastoma can clump in the bone marrow so it could still be there, just not in the places that were sampled. We also don't know how the cancer in her bones is responding (bone marrow and bone are two separate things, as I've learned). We have read so many sad stories about neuroblastoma patients with certain spots being resistent or initial responses that relapse so right now I would say we are cautiously optimistic.

The rest of this month is going to be very busy for us. Jordan has CT, MRI, and bone scans set for the end of next week. I think these scans are to monitor Jordan's progress and also, at Sloan-Kettering's (SK) request, to ensure a second surgery is not needed to remove any residual tumor (of which our oncologists don't think there is any). And then the third week of January Jordan will go through stem cell harvest at SK. We are hopeful that Jordan will not need any medical treatments that require stem cells but we are having them harvested just in case.

Getting some blood (and a nap) in clinic while waiting for our hospital room
Craig, Jordan, and Aunt Cheryl

Uncle Joe, Aunt Suzette, Craig, and Jordan

Jordan LOVES the computer...but is the only website she knows

Pushing her IV pole around the room

Pushing the chair around the room

Jordan enjoying the car in the playroom

Jordan never liked a pacifier but loves Baby Elmo's pacifer...she also pushes this baby stroller all around the house but never wants a baby to sit inside it

Helping Mommy with the dishwasher