A Numbers Game

We have become quite adept at ‘reading’ how Ellie feels or how she ought to be feeling based on her blood count, which is provided to us every morning. We keep a record of Ellie’s blood count in a diary, along with all milestones and other important information such as surgeries, medications, results, and other issues. This helps us to build a holistic picture of how she is tracking and can help us to better understand why she is/isn’t reacting to certain things the way we would expect.
 
Through the course of the chemotherapy treatment, the chemotherapy drugs (Cytarabine and Mitoxantrone) kill the cancerous cells in the blood and bone marrow. However, chemotherapy cannot differentiate between cancerous cells and healthy cells and the result is that all cells in the bone marrow, including healthy cells and platelets, are killed. This results in the inability to fight infections and the failure of normal blood functions.
 
For a period following each chemotherapy phase, Ellie’s bone marrow is unable to generate her own cells and platelets and this results in long periods of constantly being febrile, nauseated, and high blood pressure. During this period, Ellie is at high risk of many infections. To mitigate this, she has a constant supply of up to nine different products feeding through her central line. These include fluids, anti-fungals, anti-biotics, anti-nausea, and nutrition (TPN). She also receives donor blood products almost daily as she continues to chew through platelets and red blood products.
 
Ellie is currently nine days since her last treatment of Cytarabine and she is still unable to generate her own healthy cells and platelets. Typically, the recovery period after each phase is around three weeks until the bone marrow is able to generate enough healthy cells for the child to be fit enough to recommence the next phase of chemotherapy. However, we have been told to expect possibly four to six weeks because of the way Ellie is responding. This is probably because of the increased toxicity caused by the inclusion of Gemtuzumab as the trial chemotherapy drug that we opted for when enrolling Ellie into the clinical trial (see previous journal entry).
 
The four key numbers we monitor are Haemoglobin, White Cell Count, Absolute Neutrophil Count, and Platelets. For the last two weeks, on average, Ellie’s neutrophil count has been 0.0 and her platelets are less than 10. These are critical levels and show that she is immunosuppressed, neutropenic, has absolutely no means of fighting even the smallest infection, and she is unable to effectively form blood clots. This is the most challenging period of each phase as she fights through the side effects of chemotherapy.
 
So, until Ellie is able to generate her own healthy cells, and until her blood count numbers improve, we remain in the first induction phase recovery period waiting to recommence the next round of chemotherapy. These numbers are also used when considering whether Ellie is healthy enough to go home for short periods during her treatment. Patients are typically able to go home for around one week during the last week of recovery in each phase and immediately prior to the next phase of chemotherapy commencing. We have our fingers crossed, hoping that Ellie is able to recover more quickly, allowing her to go home for a short period of time and to break up the protracted periods in hospital.
 
We did have some good news recently: The second successive Lumber Puncture test shows no sign of blasts in Ellie’s Central Spinal Fluid. This is confirmation that her Central Nervous System Disease has been successfully treated. Over the course of her treatment, she will have another four intrathecal chemotherapy injections into her CSF to ensure her CNS remains clear of cancer.
 
The other relatively good news we received is that Ellie’s bone marrow type is a very common type, making it easier to find a match in the event she needs a bone marrow transplant. Paul, Kara, and Annabelle were tested to see if we were a match however, its usually only the sibling who is a match and the chances are less than 25%. Annabelle was not a match as a possible donor. We don’t yet know if Ellie will need a bone marrow transplant and we are praying that this is not required. However, at the end of the second phase of induction chemotherapy, a series of tests will be conducted, including Residual Minimal Disease testing (see earlier journal entry) to understand how well Elie has responded to treatment and if she has entered remission. If she has not responded well enough (unsure of the metrics yet) she may require a bone marrow transplant, which significantly increases her risk profile and impact her prognosis. We aren’t really thinking about this possibility yet as we are trying to focus on overcoming the immediate issues and taking things one week at a time.
 
PC