Journal entry by Hailey Krueger —
Update from visit at Rileys On friday, the 15th of January!
We are home now and settled in from Novas 2nd round of chemotherapy, while at the hospital I brought to the Urologists attention that Nova has had more wet diapers on her own. Joe and I have noticed that during the catheter insertions every 8 hours shes had less and less output and it seems shes been voiding well on her own. We had bladder scans after her pee diapers in the hospital and every scan she was measuring 0ml on the imaging, meaning shes peeing all on her own!!!! Yay!! This is a huge accomplishment for her :) Her Urology team has completely pulled all Ino - at home caths! This is Such a relief for us, knowing we dont have to be so invasive with her anymore and she can have another regular function of life back! Her port surgery went very good too! We initially thought it was going to be a 3 day stay but this round only called for 1 day of chemotherapy which is amazing. On February 4th we have an MRI to image her spine and see what progress we have had on the damage caused by the lesion. Since the 12th of December there has been increased reflexes when stimulated, which initially she never had. Her legs aren't moving a whole lot on their own but they are making small improvements which is all we could ask for! The occupational therapist was astounded in the progress shes made with the at home manipulations and therapy we've just been doing over the past month! The complete nerve regeneration isn't promised but could take up to a year to see a full turn around. We dont have definite answers on her mobil recovery but the small improvements shes made are HUGE !! We are determined to do anything to advocate for her and her mobility! After we have her MRI we can see exactly what progress we've made and have a better idea with what were up against. Then on the 5th of Febuary she goes in for her MIBG scan to see the state of her cancer after the round we just finished and to see how many if any more chemo treatments we need. These few months have been super busy with doctors and visits for all of Novas need but it seems like were headed in the right direction of things. Please continue to keep us in our thoughts and prayers 💓
We are home now and settled in from Novas 2nd round of chemotherapy, while at the hospital I brought to the Urologists attention that Nova has had more wet diapers on her own. Joe and I have noticed that during the catheter insertions every 8 hours shes had less and less output and it seems shes been voiding well on her own. We had bladder scans after her pee diapers in the hospital and every scan she was measuring 0ml on the imaging, meaning shes peeing all on her own!!!! Yay!! This is a huge accomplishment for her :) Her Urology team has completely pulled all Ino - at home caths! This is Such a relief for us, knowing we dont have to be so invasive with her anymore and she can have another regular function of life back! Her port surgery went very good too! We initially thought it was going to be a 3 day stay but this round only called for 1 day of chemotherapy which is amazing. On February 4th we have an MRI to image her spine and see what progress we have had on the damage caused by the lesion. Since the 12th of December there has been increased reflexes when stimulated, which initially she never had. Her legs aren't moving a whole lot on their own but they are making small improvements which is all we could ask for! The occupational therapist was astounded in the progress shes made with the at home manipulations and therapy we've just been doing over the past month! The complete nerve regeneration isn't promised but could take up to a year to see a full turn around. We dont have definite answers on her mobil recovery but the small improvements shes made are HUGE !! We are determined to do anything to advocate for her and her mobility! After we have her MRI we can see exactly what progress we've made and have a better idea with what were up against. Then on the 5th of Febuary she goes in for her MIBG scan to see the state of her cancer after the round we just finished and to see how many if any more chemo treatments we need. These few months have been super busy with doctors and visits for all of Novas need but it seems like were headed in the right direction of things. Please continue to keep us in our thoughts and prayers 💓
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