Talli’s Bacterial Infection

I figured I would do a detailed update on what went on with Miss T a couple of weeks ago. 2131I am sorry for the lack of detail throughout that crazy week. I know you all love our sweet baby so much and were thinking and praying for us and I just cannot express our gratitude enough. There were just so many unknowns and I didn’t want to keep posting because things were just changing so much and we just didn’t have a ton of exact answers. When Talli stopped walking during that time so many things were happening at the same time. Lex had been sick the week before and Talli got her cold. Just a regular virus with the cough that just lingered. She developed that on the Thursday before everything started happening. Sunday I gave her a facial massage and noticed her eye was red and she said it hurt. That night she slept with us and woke up and said she had to hop to the bathroom. Next day wasn’t able to walk at all. We took her in to her primary doc up in GV and he 2134wanted an X-ray. The radiologist thought that they saw a small fracture in her leg. Our minds went crazy…why would she have a fracture and what will that mean for that leg since it is so weak from radiation and chemo and everything she had been through. Our oncologist wanted her to come in for an MRI. So we quickly traveled down to UCSF the next morning. It was a long day and things just seemed weird. Her Doctor came in and we instantly could tell something was up. He simply said “I think this may be relapse guys but I am not 100% certain” He just didn’t know why her leg would have that much inflammation and looked so similar to her first MRI from when they found the cancer. They wanted us to stay overnight and get a PET scan but we just wanted to get home and process everything. As all of this was happening her eye was swelling up during the appt. I asked him to check it before we left to see if he thought maybe it was pink eye. He told us to keep an eye on it and he still wanted us to stay over and we still refused. As we were driving home he calls us and was like this is all just really weird to me. It was almost like a Dr. House case. He was like what are the chances that she got an infection in her eye, it 2137got in her blood stream and just settled in that weak spot of her leg…He was kind of just thinking out loud and was like “no that would be so unlikely” And jon said “well this is us, everything rare happens to us” It was just talk at that point. So we were in contact with him all night sending him pictures of her eye. In the morning he said lets cancel the PET and get her into the ER…I think we need to figure out what’s going on with that eye first. SOOO then the craziness just exploded. We were admitted she had to get an IV, ultrasound of her leg and MRI of her head. AS soon as we got out of the MRI we were surrounded by so many different teams. It was just insane but so neat that all these doctors were just ON IT! Lots of decisions had to be made from there. Surgery on her hip to drain all the fluid in there, antibiotics, eye test, neuro test, getting poked multiple times and then a pic line put in, not being able to move at all without being in extreme pain (she didn’t even want me on the bed near her to snuggle her cause she was hurting so much)…it was all just too much. Then it was just a waiting game. Her cultures never grew back but the fact that her eye went down and her leg is healing lets us all know it was just some sort of crazy bacterial infection! We still don’t know whether it was the same infection or separate infections and how she even got them. She is still working on walking normal again. If for some reason that leg is still hurting and not getting better (which it already is improving so much) then we will get more scans but as of now we are waiting till August to do more scans since she just had these ones and talk of relapse is no longer a concern! Yesterday she was taken off the Orthopedic care and he was very pleased with how she is recovering. Her blood test results also came back and the Infectious Disease Doctors were very happy 2140with those as well. She will still be on antibiotics for a couple more weeks. This was all JUST CRAZY! But so grateful that it was the better of the two evils and that our doctors were so on top of things that they once again helped heal our baby! She is now working with our awesome friend Tamsyn in getting that leg nice and strong again. That week really did a doozy on us. When she was younger she kind of didn’t know exactly what was going on. This time the terror she had was just devastating. She kept just asking them not to cut her leg off…It saddens me so much that that has to be a fear of hers. She kept asking Jon and I why we were letting them hurt her and why everyone just wanted to hurt her. My heart just broke yet again into a million pieces. I know that yet again she will bounce back from this with that amazing old soul of hers…and that will give jon, lexi, ne and me the strength to do the same. Until then we are just working to bring a little beauty to each day and get things back to as normal and calm as can be. Thank you again for all the love and prayers! Much love to all!