Highlights

Highlights:

1.  Managed pain

2.  Medications and upcoming tests and procedures

3.  Meeting another ATRT family

4.  Date night!

Upon arriving at Zoe's bedside this morning, I saw Zoe's face light up at the sight of Cam.  She gave him her first smile of the week.  She has physically survived the pain and is now cautiously nursing spoonfuls of ice cream and chocolate pudding as her counts rise and her body rebuilds itself.  It is difficult to discern her psychological state due to the hailstorm of medications pummeling her from all directions and how quickly she switches from giving fist pumps to receding behind penetrating eyes.

Here's a medical synopsis for those interested:

Zoe was on an increasing amount of morphine Monday which caused her to be itchy, so she was given Nubain and Narcan;  she was still in obvious distress, so the pain management team put her on Dilodid Monday night.  Once her pain was "captured", she went back on morphine since the IV machines can administer that in a constant drip in an amount right for Zoe, and so the more powerful weapons in the available arsenal are still effective for Zoe if and when she is in excruciating pain again.  

Zoe has also been on Ativan which is an anti-anxiety drug and which helps Zoe sleep (Morphine doesn't have the drowsiness effect on Zoe; we're trying to wean her off the Ativan over the next few days), and is on a constant drip of Zofran to combat nausea.  She was taken off one of the antibiotics today and is just on the one for her skin infection from the shunt operation, and one to prepare her for chemotherapy drugs.  She takes levothyroxine daily for her thyroid issue and takes Pantoprazole to protect her gastrointestinal tract.

Tonight she takes a chemotherapy drug called Vincristine.  She takes this drug quite frequently compared to some other chemo drugs.  Apparently it is used to destroy fast-replicating cells in a very early stage of replication, and it does not typically bring on mucisitis or nausea to the extent that other drugs on the protocol do.  

Zoe has not eaten anything of substance since October 5th when she had a series of operations (External Ventricular Drain, Lumbar Puncture Chemotherapy, Bone Marrow Aspiration Test, and the insertion of a Portacatheter) and entered a five-day chemotherapy series.  She also fears any spoon or syringe coming toward her mouth, so giving oral medications is both emotionally upsetting and medically inconsistent, especially if we put the medicine in food and she doesn't eat all of the food or spits it out altogether.  Today, with her neutrophil count above 500, it was determined that a nasal-gastrointestinal tube procedure was permissible (her mucisitis was receding and her white blood cells have healed her throat sufficiently).  With Zoe under the influence of Ativan, the nurses expertly slid in the tube and taped it onto her cheek.  This n-g tube will allow us to administer medications and a nutritional formula to her accurately without disturbing her emotionally.  She can now redevelop a fondness for whatever comes on a spoon.

David and I have also been discussing the possibility of having a gastrointestinal tube "peg" placed in Zoe's stomach.  This would require surgery and would mean putting another object in her stomach (the brain shunt already drains into her stomach), but it would be a more permanent solution to administering medications and nutrition, and would not affect her throat at all, so she could still receive nutrition even when suffering from mucositis.  

Zoe's GI anatomy will be examined Monday through a barium test and abdominal x-ray to see if a G tube is even a possibility, so the discussion may be moot if it seems the risks outweigh the benefits.

We learned that the chemotherapy drug that most powerfully destroys her gastrointestinal system (and results in mucositis), Doxorubicin, is only expected to be given to her next week in Cycle II, and very few times thereafter. 

Because Cisplatin from Cycle I and Etoposide from Cycle II have the potential to damage hearing, Zoe's hearing will again be tested next week to see if there has already been a change since before chemotherapy.  

On October 27th, Zoe's 3rd birthday, she will have another cerebral-spinal fluid flow test while under some form of sedation/anesthesia.  This tests the physical flow of the CSF, but it also tests for the presence of cancer cells.  If Zoe has two normal CSF tests in a row, it may be possible for Zoe to be freed from the Intrathecal chemotherapy.  This would be most welcome as the concoction of methotrexate, cytarabine, and hydrocortisone can thin nerve fibers and result in loss of memory, concentration, balance, and walking, and may worsen over time, even after chemotherapy.  

Although Atypical Teratoid/Rhabdoid Tumor (ATRT) is an exceptionally rare diagnosis, there is another family on floor 9 that we may meet tomorrow that is dealing with this same disease.  (We have been told by our oncologists that there is no consensus on Zoe's diagnosis, and that even if she does have ATRT, she does not have a classic case but rather a bit of a mystery.  Whatever she has, she is being treated under the Dana-Farber protocol for ATRT.)  Surely there will be differences between their exact circumstances and ours, but it will be interesting to be able to share our experiences with each other since this diagnosis is so uncommon.  Please pray with us that we would be a blessing to them.  Pray that we would convey grace and love to them wherever they are in life and in their ATRT journey.  Pray that we would be discerning when listening to and speaking with them.  

Tomorrow night, David and I may have a date night!  Can't continue as Cam just woke up, but Praise the Lord for date night!!

Catherine