Sunday, April 6, 2014

20 months off treatment

Elizabeth has been off treatment for 20 months now! I can't believe it. She is beginning to look so healthy. She is positive and energetic. We never thought she would have this amount of energy again. I think she is making up for those years napping and observing by dancing her heart out. She enjoys playing with her sister and brother, and often has to be told to take it down a notch. 

Elizabeth is being followed every two months by her oncologist. We go in for a full physical with blood work. We have finally been able to talk her into having her blood drawn through the vein in her arm. She was able to give blood through her port for so long that when that was taken out, she transferred to a finger prick which was less scary, but did not give the most accurate results. It took a lot of coaxing, but last week she finally did it through her arm. 

Elizabeth had an MRI in December. This was to follow up on the brain damage that was caused by her intrathecal chemotherapy. I was so proud of her. She actually went through a one and half hour MRI, non-sedated! It is difficult for an adult to be still for that long with all of the banging and clicking around you. She was completely still, with no tears, and was such a trooper! She was able to do this with the help of a child life specialist and myself talking her through it. The results were basically the same, scarring and dead tissue in her brain, some improvement in some areas, but we have decided to stop monitoring it. She will always have some long term effects from the treatment, and we will look positively at every day. 

School is a bit of a challenge. She is improving daily and I am so proud. She struggles in reading and in math, but never gives up. She works through it all, with support through the school and her tutor. The chemotherapy that she was on for so long is known for causing learning difficulties, especially in the area of math. We will follow up with more cognitive testing when she is in 3rd grade, but for now, we take each day and praise her for every step that she makes! 

Elizabeth participated for the 3rd year in a row in the Dreams Come True fashion show sponsored by Jaffis/Kyds store. She was beautiful and has really learned how to strut her stuff. We love continuing to help out those organizations that help us out so often. Not only when we were in the heart of treatment, but also now with surprises that we may not ordinarily be able to participate. 

We still endure some financial troubles. The social workers and financial advisors tell us that most families struggle for 5+ years after the diagnosis and treatment of a child with cancer. It is hard because it seems to be just another reminder of all that happened. 

Elizabeth and Luca will be turning 7 in just a few weeks. Four years ago, I would not have thought we would be here. She will be closely monitored for her entire life, and we will have to have many conversations with her so that she understands all that happened and could have happened. 

I thank God daily for her health and vibrant spirit. I treasure each time I can hear her tell a joke, laugh, and dance so beautifully

Saturday, July 14, 2012



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.

Tuesday, May 29, 2012


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.

Friday, January 20, 2012

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.

Monday, December 5, 2011

Coloring at the hospital- Jan 2011

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Surprise treat at the hospital- January 2011

First pony ride- December 2010

Christmas Angel- 2010

School Picture- October 2010

Light the Night- October 2010

Enjoying time at the hospital (as much as possible)- August 2010

Steroids kicked in- June 2010

First Hospital Stay- May 2010

Elizabeth and twin brother Luca- April 2007