Lilypie - Personal pictureLilypie Premature Baby tickers Lilypie Angel and Memorial tickers

Thursday, March 23, 2017


Hey all!!! Oh Man, Its been FOREVER!!! We have a lot to talk about. Blogging cleanses my soul, and I need to cleanse today for sure! So lets see, from my last post way too much has happened and I could literally spend DAYS writing! November 9, 2016 Brielle went in for her first Orthopedic surgery, and her 4th surgery in her life. She had her gastroc tendon lengthened. She was in a cast for 6 weeks with weekly trips to Milwaukee (1.5 hours away) to have a new cast put on and her leg stretched a little bit each time. We have to be super careful with her Chronic Regional Pain Disorder, a disorder where if we aggravate her nerves it zaps her nerves and causes her excruciating pain! They gave her a nerve block during the surgery and I think this helped this time around, as well as the Gabapentin! We were really hopeful that this surgery would be it for her and she would be able to have her heel down and not walk on her toes anymore. She has always been called the "Master Compensator" and definitely is! She walked on her toes IN the cast! We quickly saw that once the cast came off the surgery wasn't successful. I quickly questioned it to the ortho team and they said they felt it was "behavioral" and "neurological." And that lots of rehab would help. We went back for her 3 month check up and it was clear that rehab wasn't working. Brielle had made the comment one day "This is how I walk. I've always walked this way." She said it in front of her Physical Therapist, Alyssa, and we both looked at each other. Because they kept saying to us that it was behavior and neurological it definitely got my wheels turning. Alyssa said to me what does her Neurologist say? And I said we don't have one. That was my first clue like I need a neuro now. And needed to look into this. I also had some concerns about her behavioral stuff going on, so a Neuro was probably a good idea anyway. So of course I reached out to good Ol' Facebook and all of my wonderful special needs friends. I got some names and called Childrens in Milwaukee and they put us on a "triage" list and would call us back (Which BTW they took 2! Weeks to call us! By that time I had already seen Marshfield). I don't wait haha. So I called Marshfield Clinic and they got us in 3 days later! So we get down there and turns out they gave us any neurologist, not the one I wanted. She was OK. She was Asian, which I DO NOT CARE race, but my point is that I couldn't understand 40% of what she said. She was super quiet and I had to piece our conversation together to get the jist of it. She did a physical exam of strength and eyes and her legs etc and she said everything was "normal." She said she would do a MRI if we wanted which I said we did! She point blank said she didn't believe they'd find anything but she was willing to do an MRI if it would comfort our fears. Of course I didn't want to put Brielle thru this, but mama gut just said to do it. So we scheduled it for the following week. Josh had to work the day of the Scan but it needed to be done. There was a snow storm happening the night before/day of the scan and we were expected to get 4 to 8" of snow. I decided at 5pm to head down to Marshfield and just stay the night. we left at 6pm and got there about 8, Brielle and I. They weren't expecting to find anything so I got this alone! Child life was on board which was GREAT! They took her back for her scan and she was calm and cool. 45 min and it was all over. We just had to wait around for the results. We waited over an hour in the small Dr room for the results, Brielle was getting super anxious and I had just texted Josh "Im going to tell them to just call me with the results, as its nothing anyway." And the dr walked in with her computer. She opened it up and said "Well here are the results. I have a couple things to show you." GUT PUNCH! I knew right there and then that something wasn't right. She showed me the PVL that she had at birth. Then she showed me the "Lesion, Mass, possible Tumor." Tumor??? What??? What do you mean a possible tumor? This isn't what we signed up for. How did this go from a heel/toe issue to now a tumor???? My mind was everywhere. I couldn't leave soon enough. I couldn't process what they were saying. I wanted my husband. I needed support. This was too much. They said they needed to do another MRI with Contrast as this was an "Accidental Finding" and they needed to look closer at what they found and we needed to speak with a brain surgeon. Come again? A w.h.a.t??? Okay shits getting real now. I was texting Josh as Im hearing all of these scary words and the poor guy is at work, 2 hours away, not able to get to his wife whos breaking down before his very eyes. The nurses there were GREAT! I told them I wanted to go back to Childrens for the MRI with contrast. They were great helping me sign all the releases and paper work to get everything sent down to Childrens. Childrens called me that same day to speak with me and tell me the got all the paperwork already and that Marshfield was super quick on their end. Monday we got our MRI Date. Now we had to wait patiently (Anyone that knows me knows I am not patient AT.ALL!) 3 weeks til her MRI. Good news was, we would get to speak with the neurosurgeon the same day to get the results. Fast forward to March 22, 2017. Josh, My Mother in law, and I take Brielle to Children's in Milwaukee. I tried to prep Brielle the best we could for what was going to happen. She was calm and OK when we got there. Then we had to sit around in the room for way too long. The longer we sat the more worked up she got. The more anxious she got. She started to cry and didn't want to stay. Finally they came to get her and by this time she was worked up but Josh took her anyway. We could hear her SCREAMING and crying with the door closed a few rooms over. How incredibly awful and I felt so helpless for her. I wanted to run to her but I couldn't. I had to be in scrubs and sign a release or something. They brought her to me and she was a mess. Screaming please let me go home. Im scared mama. Please don't do this. My heart broke in a million pieces. WHY on earth does this little girl have to go thru so much stuff in her short little 6 years of life. Hasn't she endured ENOUGH? WHY HER GOD? I couldn't do anything but Cry with her. My hands were tied. We had to see what this mass, lesion, TUMOR was. We had to. Praying it was nothing, but what if it is? Drs came in the room and said they needed to sedate her. I was urging them to just do it. She was still screaming and crying at this point and I just wanted it to be done so she didn't have to have those awful feelings anymore. They kept wanting to explain to her what they were going to do with the mask and the smelly gas stuff and she wasn't listening. Just do it, Shes had it done, She knows PLEASE JUST STOP THIS! They finally had Josh carry her out of there and help hold her on the table. He said once the mask was on she was out within seconds. Then the long 45 min wait for her to be done. They carried her in and she was so sleepy, but happy! She was starving and I had her favorite cereal in a bag in my purse and she immediately munched on that! We were out of there about 20 minutes after she woke up. Went to Subway in the hospital for lunch and then went to her Neurosurgeons office for the results. Dr. Kaufman was GREAT! He was funny, and explained things so we understood them (With a lot of food terms ha) and not the big medical terms. He said that the Tumor is a Pineal Germ Cell Tumor. We don't know if its benign or malignant. She does have a lot of Good signs. She doesn't have signs of early onset of Puberty, urinary or bowel issues. Her Alpha Beta test came back negative which is great. She has an HCG Test out there that we will get results in a few days. If those are positive we will need to start treating it. If its negative that's great! They are also doing a spinal tap during her surgery April 7th. same above, if its positive we act, if not we repeat the MRI in 6 months to make sure it hasn't grown and go from there. Next Wednesday they meet with a team of neurosurgeons, pediatric radiologists etc to discuss her case and all together collaborate if Dr. Kaufmans plan is the best plan or they should do something else. I will hear back next week with what they decide either way. IF they have to do brain surgery he said it is easy to get too. It will be a major surgery and he said its a tough surgery on anyone, any age. But they have other options like Chemo and radiation before we go that route hopefully. Her tumor is the size of an Almond. 12mm x 1cm. It is floating around in fluid at the time not pressing against anything. But it shouldn't be there. The fact that she has no symptoms is good news. We have no idea what time frame we are looking at. Since she hasn't had an MRI since she was discharged from the NICU, we have no comparison. All we know is it wasn't there when she was born. So how long its been there is anyones guess. A lot of info to digest from yesterdays appointment. I am always told I am "Stong" and know so much. This isn't a choice. I didn't choose this life. I am simply doing what I need to do for my child. Im sure most of you would do the same if god put you in my shoes. I have my days. I am bawling my eyes out as I type this. Ive cried since Brielle left. I try not to let her see me weak. I need to be strong for her. BUT I have my pity partys. These are my emotions and I am allowed to feel pissed off, hurt, upset, angry, happy, optimistic, positive, negative, whatever I want to feel. But just as Brielle doesn't stop smiling, we wont either. We will conquer this unfortunate news as well as every other hurdles shes been tossed. Shes amazing. Shes beautiful. Shes such a joy. Shes smart. Shes Funny. Shes lovable. She will do great things!

No comments:

Post a Comment