I know everyone is waiting to hear about what her diagnosis is and I just have not been up to actually typing it out. I don’t want to see it written out. Pathology confirmed everything that Dr Hader (our neurosurgeon) had suspected. The tumour is called a primitive neuroectodermal tumor or PNET. The internet swarms with information... here is some that I have found that is congruent with what the doctors have told us.
(if you want to skip all the depressing stuff the last paragraph is happy)
Supratentorial primitive neuroectodermal tumors are fast-growing tumors that form in brain cells in the cerebrum. The cerebrum is at the top of the head and is the largest part of the brain. The cerebrum controls thinking, learning, problem-solving, emotions, speech, reading, writing, and voluntary movement.
Standard treatment of in children 3 years old or younger is usually surgery followed by chemotherapy. Other treatments may include the following: Surgery followed by high-dose chemotherapy with stem cell transplant, Surgery followed by combination chemotherapy and radiation therapy to the area where the tumour was removed.
High-dose chemotherapy with stem cell transplant is a way of giving high doses of chemotherapy and replacing blood -forming cells destroyed by the cancer treatment. Stem cells (immature blood cells) are removed from the blood or bone marrow of the patient or a donor and are frozen and stored. After the chemotherapy is completed, the stored stem cells are thawed and given back to the patient through an infusion. These reinfused stem cells grow into (and restore) the body’s blood cells
Taken from : http://my.clevelandclinic.org/disorders/ewings_sarcoma/ hic_childhood_supratentorial_primitive_neuroectodermal_tumors_and_pineoblastoma.aspx
We will have our official meeting with the oncologist on Monday to discuss Charlotte’s treatment plan in detail. But we did have a meeting before we left (on Wednesday) that gave us a rough outline of what to expect for the next 6 months. Her treatment will be the high-dose chemo with stem cell transplant as I have copied above. She will have her own stem cells collected to use for the transplant afterwards (that requires a lumbar puncture “spinal tap.”) That makes me shiver to even think about it. The first three sessions will be in a 21 day cycle; 3 days of receiving drugs with 18 days of recovery. The next three sessions she will be “hit harder” with 4 days of receiving drugs then a stem cell transplant, this will be in a 28 day cycle.
We were given a list to look over of all the drugs that will be used and all the possible side effects... including: vomiting, hearing loss, seizures, low blood counts, and overall weakness just to name a few common ones. It sounds like Rob and I will be staying at the Children’s Hospital (and the Ronald McDonald House) for the most part, Charlotte will be an inpatient while receiving chemo and then she will stay with us at the McDonald house for the rest of each cycle. Of course she will be very immunosuppressed so we will not be able to venture far, it does not sound like we will see many activities in the sun this summer. I think we will get a t-shirt made with “Mirror Mirror on the wall, Charlottes the fairest of them all.”
Picutre taken on our last day there... she has perked up so much already, amazing!
On a much brighter note we are back home. Our little family is back together for a few days and we are enjoying every minute of it. We were discharged on Wednesday around noon and made it to my Mom and Dad’s for supper. Charlotte got so excited when she recognised their gate as we drove through, she put her hands up in the air and went “whoop whoop.” (That’s usually only something she will do when provoked by an auntie in party mode.) It was so good to see her and Yolanda reconnect, giggles and hugs were exchanged all night. Within 2 hours she made more progress with her physio than she had all week at the hospital. She is now voluntarily using her right arm, and by last night had taken her first un-aided steps. We had such a great day today, made some crazy forts and blanket tents, mostly acted silly and giggled all day. I unpacked and sorted out everything, gearing up to repack for the long-term. Yolanda is still trying to sort it all out, this will be so tough on her. We are hoping that by our second “cycle” we will be able to plan for her to come and stay with us at the McDonald house for a few days.
You probably will not hear from me again until after Monday when we are back up at the Children’s Hospital.... time to focus on what I need to do here.
Thank you for your support through all this.