Enjoying a Break and Gearing Up for More Scans and Potential Surgery on Monday

I know we are long overdue for an update and I apologize for the lack of posts. I've been better about posting on my Instagram and Facebook pages, so feel free to follow those accounts and check out some pictures of what we've been doing over the last few months. 

In January, after seven months of chemo, Rucker finished his last doses of Ifosfamide and Doxorubicin. These are two very nasty and toxic chemo agents that constantly wiped Rucker out. Except during his surgery phases, Rucker would receive this chemo over 4 days every three weeks. And almost without fail, he would be back in the hospital 10 days later (usually for 3+ days) with a fever and pretty yucky side effects. His blood counts and immune system would be totally wiped out and he was tired and miserable. Not to mention, no one under the age of 12 has been able to visit him at Children's during flu season (October-April), so he spent a lot of time missing his little brother, cousins and friends. To say we are grateful and thrilled to be done with chemo for the foreseeable future is an understatement! As much as we love the 8QB floor and "Rucker's nurses" at Children's, we are excited not to have to worry about so many admissions (expected and unexpected). 

For the last several weeks, Rucker has been THRIVING! He looks the best he has since his initial diagnosis in June. If it weren't for the bald head, NG tube, and his Ninja Turtle-decorated wee-walker, you'd never know he was sick! 😉 He is eating all the time now, a far cry from a few months ago when for a while his only source of nourishment was tube feedings of pediasure through his nose. Every day he is becoming more mobile and independent. His sense of humor is back and he is totally "on fire" as his Pops would say. He is also on a tee ball team with some of his friends from school (the Red Sox) and is looking forward to playing his first game this Spring.  He can hit the ball great, but he'll need a pinch runner until we can get him walking/running on his own without his walker. Rucker has also enjoyed several visits from his grandparents, aunts, uncles and cousins, and facetiming his new baby cousin Max. He also just made a visit to school last week to hand out valentines to his classmates. It's amazing to see him back to being his energetic, sweet, giggly self and we are not taking this stretch of good health for granted. 

Rucker's Treatment Status
We are nearing the end of our initial treatment plan that was discussed with our medical team back in July. In the last 7 months, Rucker has undergone the following:

1) Two right femur fractures (June and October 2018);
2) Seven months of chemotherapy;
3) Five weeks of radiation on his right femur and left kidney tumor;
4) Surgery on November 9, 2018 in Houston at MD Anderson to curettage the tumor in his right femur and repair his femur fracture;
5) Surgery on November 26, 2018 at Children's of Alabama for his total left kidney and tumor resection.

The removal of the primary tumor and Rucker's left kidney went well. The tumor was LARGE for his tiny little body (approx. 5x12 cm) and his surgeon Dr. Bierle said it felt like a stone and had been pushing his stomach and intestines up into his rib cage. But, we received good news from pathology that the margins were clear and Dr. Bierle was able to remove all traces of it from a gross and microscopic standpoint! After reviewing the post-op x-ray of Rucker's torso, our oncologist Dr. Wadhwa said that the rest of his organs immediately fell back into place "beautifully" and that he should be much more comfortable now, which probably explains why he's finally eating more than he ever has before! 

As for Rucker's right leg, he is still having difficulty walking and needs his wee-walker to get around most of the time. We decked out his walker with Ninja Turtle stickers, LED lights, a basket, tennis balls on the feet, and a bike bell. He loves it and gets lots of compliments on it. He is slowly making more progress, climbing up and down the stairs on his own, taking a few unassisted steps here and there, and in the last few days started riding his scooter everywhere, which actually helps him get his "bad leg" moving a little more. We have an orthopedic clinic appointment tomorrow to discuss a more consistent physical therapy regimen now that our progress shouldn't be interrupted as much by chemo side effects.   

Next Steps:
This Friday (February 22) we are scheduled for scans to determine the remaining places where the cancer is present. We have not had any scans since November 1, so this will be a very big day for us in terms of finding out whether the last few months of chemo have worked (meaning whether it has stopped the cancer's growth and/or necrotized any of the lesions).  Depending on the results of the scans, we are potentially moving forward with another surgery on Rucker's lungs on Monday, February 25th. 

For those who aren't as familiar with Rucker's diagnosis, he has a rare non-rhabdomyosarcoma soft tissue sarcoma called Sclerosing Epithelioid Fibrosarcoma ("SEF") which originated in the left kidney but has metastasized to his long bones (confirmed in the right femur and left fibula) and his lungs. According to his last set of scans in November, 4-5 small lesions were seen in both lungs. Although he is currently asymptomatic in this area, the fact that he has lesions in both lungs is very concerning to his medical team. If the scans on Friday confirm that the cancer has not spread, it is recommended that we go ahead and remove the pulmonary lesions while he is strong and healthy. However, if Friday's scans show that the disease has progressed, we will not undergo the lung surgery and will turn our attention toward monitoring the disease and reassessing the treatment plan. But for now, we remain hopeful and look forward to forging ahead with surgery. As John said in one of his prior posts, this is a marathon, and we are so grateful for every mile we get to run. We do not want this race to end anytime soon, unless it's to cross the finish line with a cured son. Otherwise, we'll go as long and as hard as we need to. Therefore, we would appreciate thoughts, prayers, and good energy from all of you that his scans look good on Friday so that we can move forward with surgery next week. 

Rucker is truly one amazing kid, and we have learned so much from his strength, resiliency and great attitude. He is our hero and gives us the energy we need to keep fighting. And, as always, we are incredibly grateful to our friends, family, and community of supporters.  Please keep praying and pushing us toward the finish line!