Chemo Cycle 5 Details

We finally got some details for Isabella's final cycle of chemotherapy. Cycle 5 is completely different from the first four cycles. This cycle begins with 3 days of carboplatin, followed by 3 days of thiotepa. Thiotepa is another anti-cancer drug that we have not used on Isabella yet. Due to the intense dosages that will be given over these 6 days, we will then reinject Isabella with her own stem cells that we collected from the previous cycles. The stem cells will help with the regeneration of her bone marrow and blood cells. Right now, we are scheduled to begin on May 13, when the port in her chest will be replaced with another type of access. On May 14 (a.k.a. Day -8), we will begin with the first dose of carboplatin. After the last dose of thiotepa on Day -3, there will be a two day wait. Then on Friday, May 22, Day 0, we will do the stem cell transplant.

The doctors estimate that it could take from 10-14 days for her counts to begin to recover (roughly around Day 11), during which we will be in isolation in the hospital room. Isolation means that we will have the room to ourselves (no roommates) and they will completely sanitize the room before we occupy. In addition, during the isolation period, all visitors will be required to wear gloves and masks while in the room.

But for now, Isabella is enjoying life at home. She will be continuing with school this week and next week. Last night, we enjoyed 31cent scoop night at Baskin and Robbins. And finally, she'll be able to watch her dad play some baseball a couple times before we have to go back to the hospital!

Going Home Today!

Isabella's white cell counts are high enough that she will be discharged from the hospital and going home today! Her platelets count is still low so she will get "topped off" before going home. Platelets are usually the last of the blood cells to recover from chemotherapy. This comes just in time for us to be able to enjoy the summer-like weather that we will have in CT where it is expected to be in the 70s and 80s all weekend!

Below are a couple pictures I've taken over the last week. They were taken with a cell phone, so they are a little grainy.

If you zoom into this picture of Isabella, you'll see that her hair is actually starting to grow back. It'll probably fall out again during the next chemo cycle, but we're curious to see if her hair grows back differently.


Remember way back when and Isabella wouldn't smile for any pictures? Here she is with Daddy with a nice big smile! I took this one myself, so it's a little blurry, but if you zoom in, you will also see that Isabella's two lower teeth that fell out are starting to grow back in.


And finally, isn't technology great? This picture shows Isabella in a video chat with Annalise. Even though Annalise and Nathaniel can't be here at the hospital, they can both still see her over the Internet through our web cameras. The kids have fun with the special effects that they apply to the picture and you can see Annalise put herself into a heart.

Not the News We Wanted to Hear

The results from the MRI show that although the tumor has shown no signs of progression, it has also not shrunk. This is really disappointing considering how well Isabella has been acting and responding to the treatments. If anything positive can be taken out of this it's that the tumor is stable and not growing rapidly, but the fact that the tumor is not responding to the chemotherapy is not good.

So for now, the plan is to continue with the last cycle of intense chemotherapy in two or three weeks. This will then be followed by the stem cell transplant from stem cells that we collected from her beforehand. Following the stem cell recovery, we will then proceed with radiation.

In the short term, Isabella may be able to go home on Wednesday or Thursday. Her white count has started to come up, so as soon as they are at an appropriate level, we will be able to go home.

Thanks to everyone who has taken time out to keep up with Isabella's progress. It's still nice to know that we are not going through this alone and that people all over the world are with us.

Big Saturday Coming Up

So Isabella's blood cultures came back positive, meaning she definitely has an infection and needs to take antibiotics for 10 days (until April 25). The good news is that if her white cell count goes up, we'll be able to go home and administer the antibiotics at home instead of having to spend the whole 10 days in the hospital. But we'll be here at the hospital for at least few days.

We are also scheduled to have an MRI on Saturday morning at 8:00am. We're trying to be cautiously optimistic with this one and not get our hopes too high. It would be an amazing miracle if the cancer was all gone, but it would also be devastating if it hasn't gone down significantly or even grew since the last MRI. Realistically, we're probably somewhere in the middle and we're hoping to see very little, if any tumor left. We may not know the results until Monday.

Isabella has recovered pretty well from her fever. She's been eating great and acting normally for the last day or so. Her platelet count is also low and she had her first spontaneous nose bleed for this cycle which lasted for well over an hour. If she wasn't neutropenic, we would definitely be outside enjoying this wonderful weather.

Back to the Hospital

Isabella was just admitted back to the hospital. This afternoon at home, she had started to feel sluggish and started spiking a fever, so we drove her in. They will draw her blood and check the blood cultures to see what is the cause for the fever. She could be in the hospital up to 2 weeks depending on the results and the treatment.

Quick Update

Just wanted to give everyone a quick update. We had a nice and quiet Easter weekend. Grandma came down from Vermont to spend the weekend. Since we expected Isabella's blood counts to drop over the weekend, we didn't go anywhere or have visitors. Because of that, I ended up eating way too much ham and way too many hard boiled eggs (I think there was kielbasa somewhere in there, but it was all a blur).

Today, everyone went into the City to the Hassenfeld children's clinic for a checkup. Isabella had her blood drawn and as expected, she required a platelet and red cell transfusion. Physically, Isabella has been doing very well. In the previous cycles, when her platelet and red counts were this low, she would start bleeding spontaneously from her nose and she would be pretty lethargic. But so far, aside from a tiny bit of spotting, her nose has been ok and her energy level is pretty good.

Isabella has another checkup on Thursday, then we are scheduled for an MRI on Saturday. We have no details yet on when the next and final cycle starts.

Thanks for keeping up.

Super Sib Update

Today, as I wrote in yesterday's post is Super Sib day. We got a nice surprise in the mail as the Super Sib organization sent Annalise a trophy! Here is a picture of a proud Annalise holding her trophy. Click on the picture to see that the trophy is even personalized with Annalise's name!

Happy Birthday to a Super Sib

Today is Isabella's big sister's birthday. Ever since Isabella was born, you could just tell how much she loved Annalise and vice versa. Annalise has done a tremendous job over the last few months during this extremely difficult time. We've all had a lot of new jobs and roles around the house and Annalise has picked up her share. Whether it's helping Isabella take her pills, or reading a book with Isabella, or watching Nathaniel while we attend to Isabella, or acting as a pillow for Isabella when they watch TV. It certainly can't be easy for a 9 year old, especially one who loves attention, to watch her little sister with cancer or to only have one parent home at a time for several weeks. Annalise may have some "difficult episodes" now and then, but not once has she complained about helping out Isabella.

Tomorrow is also Super Siblings Day. There is an organization called Super Sibs which support the brothers and sisters of children who have life-threatening diseases. It's very easy for other children in a family to think "Hey! What about me?" as the parents attend to a sick child, and I'm glad there's an organization out there that thinks about the rest of the family during these times.

Chemo Cycle 4 Complete

Isabella had a much better day today. Julianne took her into Hassenfeld today where they gave her IV fluids to hydrate her. She immediately felt better and ate some food. The good news is that she kept it down. When she got home, she finished up the last of the chemo for the cycle (temodar pills). After waiting an hour, she ate some more and held that down as well. She has not felt any nausea since early this morning. The temodar and nausea may hit her again later this week, but it is a good sign that she has an appetite. Isabella is also scheduled to receive IV fluids at home this week to help keep her hydrated.

Spoke Too Early

The effects of the chemo started hitting Isabella a little harder yesterday. It looks like Saturday night's vomiting was the start of her nausea and not just a simple case of over-eating. Yesterday, although Isabella had a bit of an appetite, she would throw up whatever she ate a few minutes later. This goes for both solids and liquids, so we're going to have to find a way to keep her hydrated.

When she's not eating, Isabella's spirits are good. Yesterday, we participated in an Easter Egg Hunt at out church. Unfortunately, they served some cake which Isabella wanted right away, but then threw it right up. But after a few minutes, we walked back home and played outside for a while.

Today, Julianne is bringing Isabella into Hassenfeld to get her some IV fluids to get her hydrated, and we may need to do IV fluids at home if she can't hold anything down. Today will also be Isabella's final day of temodar for this cycle. She's had a tough time this time around with swallowing pills due to anxiety, which causes her to cry and choke. But after today, she won't have to take the temodar pills anymore. We also hope to be home for at least a few weeks before the start of the final chemo cycle.

Chemo Cycle 4 Day 3

Isabella is doing unexpectedly well so far in her chemo. So far, through day 3, she has not complained of any nausea and has eaten very well. After she took her meds for the day, we were discharged and are at home where Isabella ate a bunch more. So we have two more days of temodar than that is it for this cycle.

UPDATE: Well, right after I posted this, Isabella threw up everything she ate for dinner. Right after she threw up, Isabella was smiling and said her tummy felt better. We just think she ate too much and not necessarily something with the chemo.

Chemo Cycle 4 Begins

Well after a nice three week delay, Isabella is back in the hospital and has started Cycle 4 of her chemotherapy. This cycle is a little different from the first three in that there is no Vincristine given at all during the cycle. They still give Isabella Carboplatin today and tomorrow, and the temodar pills for the next 5 days. The carboplatin needs to be administered in the hospital, but the temodar can be taken at home, so we should be home on Saturday.

I'd like to say that we can see the light at the end of the tunnel, but to quote an old Metallica song, "the light at the end of the tunnel, is just a freight train heading your way." We're really nervous about the MRI scheduled for the 18th because that will show how much we've done and how much we really have left.