Elizabeth had her MRI at the end of June to monitor the white matter damage in her brain. The results are the same- no changes at all, which is good; better news would have been that it is improving, but that may not happen, as long as there are no side effects, we take it as a war wound in this battle against cancer. We will check it again in 6 months to a year.
Her last intrathecal methotrexate and port vincristine was administered on July 5. Overall, she handled the procedure well. She went in pretty happy, the last ride down the hallway for her and mommy on the bed. She did begin coughing as they administered the anesthesia and then again went into an attack at the end of the procedure. This led to longer monitoring in the procedure room which left me fretting. We ended the day with an x-ray to make sure her lungs were clear, and all was fine. During the spinal chemo they did a cranial pressure check as part of the study she is participating in, again it came back high, but no side effects so we just don't worry. I truly believe that they will find that all children receiving intrathecal chemo will have high cranial pressures and just some have side effects of headaches, dizziness, nausea, vision problems, etc
Although active treatment will be ending, we will still have a lot of worries, and monthly checks of her blood. The prayers cannot stop and the burdens we have acquired will be around for a while.

So much has happened since my last post. More chemo adjustments so that she is now at 125% on all oral chemo, a fall which resulted in a CT scan and MRI, lots of ups and downs with steroids. Most importantly was the MRI in April. The results were about what we expected. The MRI confirmed what the CT scan reflected, Elizabeth has mild damage to her lower left lobe of the brain, directly caused by her spinal methotrexate chemotherapy. It is shown in research that 20% of patients receiving spinal MTX have this damage, but many oncologists feel that the number is greater they just don't have reason to investigate it yet. So, what now? Well, not much can be done. We had to make a decision based on a lot of what if's?! So, she had 2 spinal treatments left and we have decided to take a middle of the road approach. We could have opted to continue with both, but the question would be- could more damage occur? Or, we could cancel both, but what would that do to the leukemia? So, we have decided to cancel the April spinal MTX treatment and have another MRI done in June to measure the damage. If the damage remains the same and has not gotten any worse, then we will proceed with the July spinal MTX. If there is more damage, then we will cancel that one as well. However, our oncologist felt like if the damage was "growing" or getting worse, we would know before that point. Our indicators would be changes to her cognitive skills, motor skills, and/or seizures. We will be having her next MRI on June 18th to decide our next steps, I seem to find myself looking for things, hoping I don't see any changes. We also had some cognitive testing done that showed average IQ and abilities- thank you! And, we have continued to try and give back to the community with dinners, fundraisers for programs, etc. Thank you all for your continued support of us, we are able to continue with her care because of your donations.

January Spinal Chemo

I had my January intrathecal chemo last week. It was a really rough day! Mommy and I had to wait for a long time at the pediatric surgery floor because there were so many other children needing treatment or surgery. I had a lot of anxiety which made things worse. I've been feeling kind of yucky the past few days, and had my mood swings from steroids, but am beginning to feel like myself again. Thank you for helping me and come back and check on me soon, and visit www.caringbridge.org/visit/elizabethforte for more on my story.