This is an update that we had hoped we would never have to post. Isabella is relapsing. She had been having some pain in her pelvic area since the end of August. We brought her to CHOP that week and the Dr. said that there was nothing there and that she’s perfect. There was no reason to do further testing. A couple days later she said the pain went away. She got the pain again when we were on our way to Disney, but some other things around it made us really think it was just constipation. Again a few days later, the pain went away. The last time she had it was on 10/26. All these times the pain came almost exactly a month apart. I called the Dr. that day and she said they’d examine her during her scan appt. that was on 11/8. So, the Dr. did a physical examination and could feel something but wasn’t sure if it was hardened stool or something to be concerned about until she reviewed the MRI. Isabella had a PET and a Chest CT on Friday and the PET confirmed that the cancer was back in the spot that she had been complaining about pain. Very luckily, that is the only spot it is in, although we are waiting for her bone marrow biopsy to be done to confirm that it is not there. She has surgery scheduled for Tuesday. They will be removing some, but not all, of the mass, (which the Dr. said looks to be growing from the lymph nodes in her pelvic area). They cannot remove it all because there are blood vessels wrapped around it. She will have a port put back in, and they will do the bone marrow biopsy. Treatments should start on the week of Thanksgiving. We will get the full treatment plan on Friday. All we know so far about it is that they do not use the same drugs as before for recurrent Rhabdo, and that this mass looks to be outside the original radiation area so she should be a candidate for proton radiation again. But again, we won’t know definitely until Friday. We will post more when we know.
We’ve had a crazy couple of weeks.
For about the past month and a half, Isabella has had a much rougher time with the chemotherapy. We’ve notice her become much sicker and she had some complications that led to getting biopsies done of her bladder. Very thankfully, we found out last week that the biopsies were all negative.
Because of the issues she had been having and as well has her blood counts not recovering as much as they wanted, there was talk between the doctors of stopping her chemo. The doctors explained that although her original treatment was discussed to go on for a year, it was always for twelve cycles of 21 days, which we hadn’t been aware of at the time.
Since she was able to complete all 12 cycles without taking even one week off, we got the decision yesterday that today would be her final day of chemo!! We surprised her last night with the amazing news!
She will be receiving new scans at the end of August, but for now, we feel very blessed that we received this amazing news in time for her birthday.
We are sorry for our lack of updates. Things have just been hectic. Isabella has been doing very well for the most part. Since our last update she's needed two blood transfusions because her hemoglobin had dropped so low. Luckily, she tolerated it well. They've also been able to get her off the steroids that she was on for the allergic reaction, which is great because it was making her blood sugar spike up. Through everything, she's stayed her normal upbeat self! She's been continuing to go to school, dance, gymnastics, and riding lessons. She also competed with her semi dance team in 2 competitions and had the best time!! She will be getting scans done over the next two weeks. These will be the first scans since radiation so we are really really hoping for some good news. As always, your continued concern and support mean so much to us!!
Isabella is doing really well right now. She had a very rough start with the chemo that they have her on this time. Out of her first three infusions, she had an allergic reaction two of the times which caused her to not be able to breathe, so they had to stop them. After a lot of brainstorming between the team of doctors at CHOP, they decided to put her on pre-meds the day before and the day of her infusions in hopes to prevent the allergic reaction. It seems to have worked, and she did not have the reaction the past two times.
Last week, the doctor felt where Isabella’s tumor is, and said that just by feeling, it seems to be about 40% smaller already. At this past Tuesdays appointment, the doctor could barely even feel it at all. They have scheduled scans next Friday, 12/23, so we should have exact measurements, and maybe the radiation plan soon after that.
Isabella seems to be tolerating these meds much better than the last ones. She is not as sick as she was last year, and her energy level as well as her appetite has been great. We are hoping that this continues.
She just had a blast at her Christmas dance recital today and is enjoying everything about the holidays!!
Thank you for your continued concern for our daughter and for all of your good thoughts and prayers. PLEASE keep them coming!!!!
We met with the Dr. yesterday to discuss all of Isabella’s scans that were done over the past couple weeks, and it was great news all around! There were no signs of a tumor!!! The plan stays the same that she will continue to receive chemo through November, but she’ll be able to take a one week break over her birthday for a family trip to her favorite place!! °o° We hope everyone has a great summer! Isabella is looking forward to a fun summer of playdates, swimming, dancing, staying up late and sleeping in!
Happy New Year!
On our last post, Isabella was scheduled for scans. There was a scheduling error, and it turns out they were not supposed to be scheduled until the beginning of the year. And the new year has brought great news! We received the results from her scans and they showed that the tumor has SIGNIFICANTLY decreased in size! This means that her cancer is responding to the chemo regimen that they have her on. Additionally, the tumor has pulled away from the artery it was up against. Even with these updates, they have decided not to do surgery to remove the tumor. However, they are still proceeding with proton radiation which will start January 25th and continue every weekday until March 9th.
Aside from this, she has been doing outstanding with her treatments! Luckily, they have not made her too sick, and she has SO MUCH energy!
She had a great Christmas and New Year’s. We surprised the kids with a quick trip to Disney. On Tuesday, Dec. 27th, she had chemo in the morning and we were set to fly out that evening. We moved up her appointment to 9AM and it turned out to be a great move. Because of the holiday schedule, there were a large number of kids set to receive chemo that day. The pharmacist's hood broke down and they were not able to make the chemo drugs, and most kids were sent to Philadelphia, or moved to the next day. That is, except for the one lucky person who had their chemo medicine made before the equipment broke. Lucky Isabella! It was a great trip.
Thank you all for your continued support and prayers.
Sorry for the lack of updates, but it’s been a rough couple of weeks. After we received the news of the results of the scans, we immediately met with several doctors to plan our next course of action. Isabella rapidly started building up fluid in her abdomen, which caused a great deal of discomfort and pressure on her stomach, and which caused pain and a lack of appetite. We decided to begin chemotherapy right away and she received her first treatment on Friday the 15th. Our hopes were that the treatment would help bring the fluid down, since this buildup would prevent her from being able to proceed to further trials.
For the first couple of days, she was in some pain and uncomfortable, but she was on medication that helped a lot. After a few days, she began to eat a little more and her abdomen appeared to be softening. After a few days, she started to act more like her old self and her mood began to change greatly. She was able to go to her dance class party, which helped her demeanor. In the days since, she has been acting like her old self, with some fatigue. She hasn’t needed her pain medication in a couple of days and she’s been able to leave the house and play with friends. We are thrilled that she is feeling better and look forward to a ‘normal’ Christmas Day. We will continue this treatment and pray that the fluid completely subsides as the next course of treatment depends on that. She loves hearing from everyone and appreciates all the good wishes. Thank you to everyone who has reached out to her and to her friends who remain her greatest supporters.
Today was Isabella's last day of Proton! Since her appointments have been at 8:30, the last appointment of the day, no one would be there to hear her ring the completion bell. The last time she finished proton, she was too scared to ring the bell, but this time she was READY! Her forever besties were able to come and completely surprise her. This is a moment that none of us will ever forget!!!
We were hoping to have some really good news to share, but unfortunately that is not the case. After having scans done last Friday, Monday and yesterday we found out that Isabella's cancer has returned. We are not sure at this time what her course of treatment will be. We need to meet with a doctor next week to discuss trials that Isabella would be eligible for. She's been experiencing some pain so we are really hoping they can do something for her quickly.
We met with the doctors Friday and received some good news. The bone marrow biopsy came back negative. They gave us the treatment plan which will start tomorrow (November 21st). Fortunately, it can be done outpatient. Depending on how she feels, she can still continue her regular activities. She will be treated through the end of the year, and then will receive new scans to see how the treatment is progressing. She is eligible for radiation, likely sometime in January. From there, she will likely repeat this cycle for nine months, similar to last time. We thank everyone for their continued overwhelming support and prayers. Hopefully, she will be responsive to this new treatment as she was to the last one.
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