You are currently browsing the Neuroblastoma category.
Tuesday starts her 5th cycle of chemotherapy this morning. We’ll be in-patient thru Friday if everything goes as planned. We ask for prayers from you that the chemo is destroying all evidence of disease in Tuesday’s body while causing no long term side effects. The chemo drug, Cisplatin, can cause irreversible hearing loss and nerve damage. Can. Not will. Please pray for a smooth week for all of us. Piper and the boys are felling pretty anxious this time.
Friday: I turned 30-something. Charley spoiled me with a new camera.
you beat the odds. So there is no doubt in my mind that Tuesday, with the soulful help of her sister, can once again beat the odds. 2 for these two is going to be a year to celebrate. And here they are at just a few weeks old. (Insert “Aaawwwww!” here) It was a pretty mellow birthday since we didn’t know what Tuesday’s counts were but knew they were really low. It’s our birthday tradition to go out for donuts, but since we didn’t want to expose Tuesday to anything we stayed in our jammies and went through the drive thru at Lamar’s and let the kids watch an Elmo dvd. (much to their brother’s chagrin.) We came home and opened presents and watched the girls play in their new play house and, well, what more could you ask for.
54 days.
miracle ˈmirikəl
nouna surprising and welcome event that is not explicable by natural orscientific laws and is therefore considered to be the work of a divineagency : the miracle of rising from the grave.• a highly improbable or extraordinary event, development, or accomplishment that brings very welcome consequences : it was a miracle that more people hadn’t been killed or injured [as adj. ] : a miracle drug.
What do I know, but I’m guessing the Pediatric ICU isn’t cavalier with it’s use of the word “miracle”. Afterall, saving lives is what they do. But when we paraded out of the PICU with packed wagons, adorned with balloons and a zoo of stuffed animals, the nurses and doctors gathered to watch us leave, many of them calling Tuesday a miracle. After witnessing her last month, there is no doubt in our minds that she is a miracle.What exactly was going on with Tuesday this past month, you ask? Let’s see if I can put it in to words.
* Spent the weekend in the ER after her pediatrician was unable to get an accurate blood count.* Diagnosed with Autoimmune hemolytic Anemia and sent to Children’s hem/onc clinic.* Hem/Onc appt. Diagnosis changed to Neuroblastoma. What the hell is Neuroblastoma?* Checked in to Oncology in-patient.* Surgery to do biopsy, bone marrow aspiration and put in a broviac central line.* During surgery they find that the “enormous” tumor growing on her adrenal gland has started to die off and she begins bleeding in to the tumor. Never really recovers from surgery. Still concerned about internal bleeding because her red blood counts keep dropping. This begins the start of blood transfusions.* Testing for accurate diagnosis and staging continues. CT scan. MIBG. Bone scan. * Because of the size and location of the main tumor, Tuesday’s lungs are squished and she is unable to breath well on her own. Moved to Pediatric Intensive Care Unit. * Start round one of chemotherapy in PICU. * Tuesday is still having bleeding in to the tumor and starts to 3rd space fluids in to her tissues. * Chemo continues. Tuesday is now 6+ liters positive in fluids and begins to resemble Chunk from The Goonies.* Lungs fill with fluid. Put on the High Frequency Oscillator Vent which requires her to be paralyzed.* Her CO2 levels continue to be dangerously high. * Talks with surgery about putting in drains to help with fluids in her lungs. * Talk of “compartment syndrome” (you don’t even want to know the fix for this problem)* Begins forming mini clots in her organs. Put on an experimental study of low dose Heprin.* Her ANC (formulation of white blood cell counts) begins to climb back up. * After 9 days on the Oscillator, nine days of hell, she goes back on the conventional vent. * Count recovered. Starts to heal. Starts to fight the vent. Mom starts to fight to docs. Finally, all agree that we need to give Tuesday a shot at breathing on her own.* Starts cycle 2 of chemotherapy while still on the vent.* 30 days in the PICU, Tuesday is extubated and put on Bi-pap. (think sleep apnea machine) HATES IT.* Off Bi-PAP. Her O2 and CO2 levels are better than when ventilated. Put on a small amount of O2.* Discharged from PICU! Unfortunately there is no room on Oncology.* After 33 days in the PICU we transfer back to Oncology.
So there you have it. God was busy this month. The night after Tuesday was taken off the vent, I was holding her and we just stared at each other. I asked her if Angels had been watching over her and these huge tears started rolling down her cheeks. I can only tell you that the look on her face told me I didn’t know the half of it. Thanks be to God.Thanks to the amazing nurses in the PICU that cared for and cared about our baby. Thanks to the doctors who each played an integral part in her recovery.Thanks to all of you who have and who continue to pray for Miss Tuesday.We are humbled and honored at the outpouring of love. How blessed we are to know so much love.
So as of just a few minutes ago Tuesday was down to 3001 ML positive for her I&O. That’s hospital talk for Ins and Outs. You might think that seems high, and you’d be correct, but it’s less than half of where she was just a week ago. Since the next round of chemo starts Monday, she should be in a great place fluid wise. (Tuesday was 6.4 liters up for fluid, that’s 6400 milliliters or ML. She’s now down to 3 liters or 3001 milliliters or 3001 ML. Getting rid of the fluid leaves more room for things like, um… her lungs and her heart. Chemo requires lots of fluids so starting with no extra fluids is great). Where did she store all those fluids? Topic for another post.
