Day +7 Update

So far, Day +5 and +6 have been Isabella's most difficult days. In addition to the nausea and mucositis, she also has been battling a fever so in general she's felt pretty rotten. Since they don't know what exactly is causing the fever, they've been pumping her with all sorts of antibiotics and antifungal medicines. Isabella hasn't really felt like doing much over the last couple of days except to watch TV or listen to music since any sort of motion or activity causes her pain. Because of the pain, Isabella is hooked up to a morphine drip which she can activate with the push of a button.

The good news is that we are hoping that Isabella has turned the corner. Today, Day +7, although she still felt pretty rotten, she didn't have to throw up as often and she sat up more. Also, her temperature came back down to almost normal, so hopefully, she should begin to feel better soon (as in Sunday or Monday).

Day +5 Update

Today is Day +5, i.e., 5 days after the stem cell transplant. Isabella continues to feel the effects of the chemotherapy. In addition to the nausea and lack of appetite, she is also suffering from mucositis. Mucositis is a common side effect of thiotepa where the mucous membranes along the digestive tract become inflamed or ulcerated and slough off. Isabella has been spitting out and vomiting the mucous on a regular basis and it looks pretty nasty. In most cases, the pain caused by the mucositis gets so bad that the patient is given morphine and Isabella is no different.

The good news is that we are halfway through the worst week. The mucositis should clear up within a couple days and her blood counts should start rising which will help her to start feeling better. On Day 11 (which will be Wednesday, June 3), the stem cells that were transplanted on Day 0 should have worked their way to Isabella's bone marrow and should be cranking out new blood cells. After that, they say that the blood counts come up very quickly, after which we would be able to go home.

But until then, we remain in isolation. We've played a lot of Uno and watched a lot of movies and TV. Isabella has also drawn a bunch of pictures that we put up on her wall with a bunch of other inspiring works of art. Since Isabella really hasn't had the strength to walk or move, being in isolation hasn't been has bad as we thought it would be.

Our 12 Year Anniversary

Today was not only a beautiful Memorial Day, but also marked 12 years since Julianne and I were married. In contrast to today, our wedding day was marked by heavy showers throughout the day. Today was also the first time in those 12 years that we did not wake up next to each other on our anniversary day as I was home with Nathaniel and Annalise while Julianne stayed at the hospital with Isabella. Since Julianne's dad is down visiting from Vermont, I was able to go into the hospital today so that we can spend some portion of the day together.

Isabella continues to feel the effects of the chemotherapy. Her doctors say that this upcoming week should be the worst of it (the main reason I chose this week to take vacation). In addition to her nausea, which seems to be increasing, her appetite has also gone to pretty much nothing. On top of that, her blood counts have really dropped and she is now officially neutropenic (low white cells) and she received a red cell infusion yesterday. We also expect her to receive platelets soon. Hopefully soon she'll start to feel less nauseous and sometime next week, her blood counts should start to recover. With any luck, we should be home by late June and be able to enjoy part of the summer before having to do anything else medically.

Stem Cell Transplants

Isabella had her stem cells transplanted back into her today. These were the stem cells that were harvested from her from the last couple of months. I've learned a lot over the last few months and added a few more things on Saturday as I watched her get the procedure.

Stem cells in general are special cells that can divide and turn into other types of cells. The peripheral stem cells that she received can turn into any type of blood cells. This is different from embryonic stem cells which can turn into any other cell including spinal cord or brain cells and the cause of many passionate debates. Once the stem cells are transplanted, it takes about 11 days for them to travel through the blood stream and to the bone marrow in her hip where they will hopefully implant themselves and begin dividing to create new blood cells.

After her stem cells were harvested, they were frozen and stored away. They added a preservative to the blood increase the viability of the cells while they are stored. When the patient is ready to receive the stem cells, the blood is thawed and put into a giant syringe and pushed through a central line (in this case, through Isabella's port). While the blood was being transplanted into Isabella, an interesting thing happened. Even though the push is happening through the port, Isabella got a very strong, weird taste in her mouth. This common occurrence happens because of the preservatives in the blood. The taste was so strong, that for the 10 minutes that the blood was being pushed, Isabella got extremely nauseous and vomited and had to spit several times. The doctors warned us of this ahead of time and we were prepared with lollipops to try and negate the taste, but it only helped a little. The really weird part to watch was that within a couple minutes of the syringe being emptied, Isabella felt better and perked right up.

So for now, we'll remain in isolation for at least a couple more weeks. Isabella is still feeling pretty sick from the chemo, but hopefully, those symptoms will start clearing up soon. Her appetite has been ok, but she hasn't been able to keep anything down, but they are pushing nutrition through her port.

Below are some pictures from a visit from Annalise and Grandpa.

Moved to Isolation

So today we were moved to an isolation room in the pediatric unit. An isolation room is the same as a regular room except that everything was sanitized before we moved into the room. And by everything, we mean everything, as they wiped down all our stuff as well. Moving into the isolation room is in preparation for Isabella receiving her stem cells later today (Saturday).

Also, her blood counts continue to remain steady, although the doctors expect them to drop within the next few days. The stem cells take about 7-10 days to travel through the blood stream to get to the bone marrow before they can start creating blood cells. So although she's not neutropenic yet (low white cells which make her highly susceptible to infections), she will be soon. During that time, all visitors will need to wear masks and gloves.

Isabella is still doing amazingly well. She has thrown up a few more times, and earlier today she didn't eat anything. But later in the afternoon, she started asking for some stuff to eat, including some pudding and chicken noodle soup. Of course, she threw that up a little later, but at least her appetite may be picking up. Later in the evening, she ate some chinese fried rice and pizza and milk and so far has kept that down. Later on Saturday, we also expect a visit from Annalise and Grandpa so that should certainly cheer her up.

Isabella also loves to participate in the many activities that the Child Life services provide here on the pediatric floor. Two of her favorite activities are watching the clowns perform magic and music group therapy. Here are two pictures below. The first is Isabella watching Looney Louie do some juggling. The second picture is with her in music group therapy playing some bongo drums.

Last Day of Chemo!

Today, Isabella got her last dose of chemotherapy, a three hour drip of thiotepa. As I wrote previously, although she is doing much better than in previous cycles, she has started to feel the effects of the chemo. She has vomited a couple times over the last couple days and her appetite has been reduced to almost nothing. Also, she is not yet neutropenic (low white cells count) and her other blood counts are still ok, but they continue to drop and we expect them to bottom out within the next few days.

Today, she also started to feel more tired and did not want to do much. For the last couple of days, she would have the energy to walk around and take part in some of the playroom activities. But today, she didn't feel like walking and took several naps.

So the plan for the rest of the week is to have a two day rest on Thursday and Friday. On Saturday, she is scheduled to receive her stem cells that we collected over the last couple cycles. This will help her blood counts recover. We will also be moved to an "isolation room" within the next couple of days in anticipation of her white counts hitting zero. An isolation room is simply a regular room that the nurses completely sterilize before we move into it. In addition, all visitors to the room (including the nurses, Julianne, and myself) must wear gloves, masks, and gowns. It should take about 10-14 days for her counts to start to recover, then, a few more days when we will be able to go home.

So while we're excited to be done with the chemotherapy, we will be on edge for the next couple weeks as Isabella will be extremely susceptible to infection and her body's immune system will not be able to fight any infections. Since she won't be able to leave the room, we will also need to find a way to entertain ourselves in the room.

Chemo Cycle 5 Continues

Today, Isabella's creatinine clearance was normal so they continued with the third dose of carboplatin. They will check her urine again in the morning just to make sure her kidney functions are still ok. Isabella has started to feel some of the effects of the chemo, but her appetite is still ok and her energy is still good. She receives anti-nausea medication, which seems to help during the times when she starts to feel nauseous. In previous cycles, by now, Isabella would be vomiting several times a day and not have the energy to get out of bed, but that is not the case, at least so far. Also, the anti-nausea drugs would have little effect.

On Monday, she will begin 3 days of thiotepa, a chemotherapy drug that she has not gotten yet. Since everything got pushed a day, she will probably not receive her stem cell transplant until Saturday.

A Slight Delay

Today, Isabella was supposed to receive her third day of chemotherapy, which consisted of carboplatin. One of the side effects of carboplatin is that it may affect kidney functions, so every morning they analyze her urine to check her creatinine clearance. This morning, her creatine clearance was lower than normal, which may indicate an issue, so as a precaution, the doctors decided to skip today's chemo dose, check her urine again tomorrow, and go from there. They didn't seem too concerned about it and have indicated that a high percentage of kids on this chemo cycle have this type of delay.

Other than that though, Isabella is responding surprisingly well to the first two doses of carboplatin. Her appetite has been excellent and she only had a little nausea on Friday morning. She did throw up a little today, but it was after she had just eaten and then played hopscotch about a dozen times! We don't think this vomiting was due to the chemotherapy because immediately after she threw up, she said she was hungry again and ate a plateful of baked ziti! Her energy levels remain high as well as her spirits.

She also got a visit from Annalise and Nathaniel today and the three of them played for a few hours this afternoon. In addition to the hopscotch, they played catch, played on the computer, and ran all around the pediatric unit.

Chemo Cycle 5 Begins

Isabella got her first dose of the last cycle of chemotherapy today, a four hour drip of carboplatin through her new port. It usually takes her a couple days or so before she begins feeling the effects. For now, she's feeling great and her appetite has been pretty good. So one day down, five more to go. Julianne stayed with Isabella last night and tonight, and it will be my shift tomorrow and Saturday. I don't know how we did this for four months before!

Getting Settled In

Once we got back to the Pediatrics unit, Isabella was so hungry she had a couple pudding cups. In this picture, she shows off her brown, pudding smile!
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Out of Surgery

Isabella is out of surgery and resting in the recovery room. The surgery went well, but she is feeling a bit achy. Her appetite is ok as she had a popsicle and some yogurt and is asking for more food. We are now just waiting to be transported to the Pediatric floor.

Last Day of School

Today, Isabella went to kindergarten for the last day. Her teachers and classmates gave her a small party and some gifts as she left.

But tomorrow, as her friends continue with the school year, Isabella returns to the hospital. There she will have surgery to replace the mediport in her chest with a different type of port. She will then receive chemotherapy through the port for 6 days beginning on Thursday. We will probably be in the hospital at least through the first week of June, as it will take that long for her blood counts to recover. For details on this chemo cycle, refer to the post Chemo Cycle 5 Details.

A Word from our Senator

I got the following response from Senator Lieberman regarding the National Childhood Brain Tumor Prevention Network Act. If you haven't contacted your representatives yet, there are links of to the right.

Dear Mr. Icatar:

Thank you for contacting me regarding your support for the National Childhood Brain Tumor Prevention Network Act (S. 305), which was introduced by Senators Charles Schumer (D-NY) and David Vitter (R-LA). Companion legislation (H.R. 653) was introduced in the U.S. House of Representatives by Representative Barbara Lee (D-CA). I support legislative efforts to promote biomedical research so that people can benefit from new treatments, and maybe even cures, for diseases.

As you may know, S. 305 would require the National Cancer Institute (NCI) at the National Institutes of Health (NIH) to establish a National Childhood Brain Tumor Prevention Network. This new network would be tasked with conducting and coordinating research, providing grants, and issuing guidance and recommendations from a panel of research experts with the ultimate goal of preventing and curing pediatric brain cancers.

I understand that very little is known about the causes of brain tumors in children and that the few risk factors that have been identified explain only a small fraction of all such cases. However, this disease clearly inflicts painful heartache on families and cuts short the lives of far too many children who suffer from brain tumors. According to NCI, brain tumors are the third most common type of childhood cancer, after leukemia and lymphoma. Tragically, however, unlike leukemia and lymphoma, childhood brain tumors do not have the same favorable prognosis. Each year, approximately 2,200 children and adolescents are diagnosed with malignant central nervous system disorders, over 90 percent of which are located within the brain. Sadly, children diagnosed with malignant brain tumors have only a 60-percent survival rate; and those who do survive have long-term health problems due to the invasiveness of brain tumors and their treatment.

I recognize that childhood brain tumors present a unique challenge for doctors and researchers since treatment options for children differ from treatment of brain tumors affecting adults. Despite the differences between brain cancers and other childhood cancers, as well as the differences better adult brain cancer and childhood brain cancer, NCI does not have a separate division dedicated to studying childhood brain tumors. The new National Childhood Brain Tumor Prevention Network set forth in S. 305 would help fill this gap in research and treatment, providing a much-needed resource for experts and doctors, as well as grant funding for research programs.

S. 305 is currently pending consideration by the Senate Committee on Health, Education, Labor, and Pensions. To keep track of future actions on this legislation, you can go to the "Bill Tracking" service at http://lieberman.senate.gov/issues/resources. Please be assured that I will continue to keep in mind your support for critical efforts to combat brain tumors in children. We must do all we can to provide NCI with the resources necessary to study and fight this terrible disease and provide new hope for all children to grow up and lead active, happy, and healthy lives.

Thank you again for sharing your views and concerns with me. I hope you will continue to visit my website at http://lieberman.senate.gov for updated news about my work on behalf of Connecticut and the nation. Please contact me if you have any additional questions or comments about our work in Congress.

Sincerely,


Joseph I. Lieberman
UNITED STATES SENATOR

Nothing New to Report

There's nothing new to report. Isabella has been and will be going to school this week and the beginning of next week. It is nice to return to a little bit of normalcy, even if only temporary for now. We are still scheduled to begin the final chemo cycle a week from today, after which we'll be in the hospital for several weeks. So for now, we're all enjoying being home together.