Relapse Journey

Day +25, 211 days since relapse

So this happened this week: Bella gets to leave her isolation room for a walk. Not for a medical procedure but for a nightly walk! Woot! Woot!
Like a koala she clung to mumma at first, tired scared & excited all at once! Not easy when you’ve been confined to your hospital bed for 12 weeks.

Team Bella Update:
Day +25, Pre-B, ALL (High Risk), Deletion p16, Relapse, BMT #2, 211 days since Relapse.

Bella has had a rough trot this week physically. A side effect of her intense 7 month relapse treatment , but more so due to under-going x 2 BMTs back-to-back. Her body probably feels like it’s been hit by a freight train.😣

Sometimes the mind wants to, but the body just can’t.

Before I move on to share Bella’s week in progress, Iet’s clarify a couple definitions which are quite important to our journey. This will explain why bone marrow recipients struggle to regain their strength even after 1 year (or more) & can have many more complications (GvHD) which patients who don’t go through BMT may avoid.

Myelosuppression VS Myelablation.

Myelosuppression is a condition in which bone marrow activity is decreased due to chemotherapy treatment (e.g when Bella was out on Kookaburra ward she had scheduled chemo causing her to become immunosuppressed/neutropenic).

Chemotherapy medicines can result in fewer red blood cells, white blood cells, and platelets. When myelosuppression is severe, it is called myeloablation.

Myeloablation occurs when a patient is given high-dose chemotherapy that kills cells in the bone marrow, including cancer cells. It lowers the number of normal blood-forming cells in the bone marrow, and can cause severe side effects (for example, the oncology team needed to obliterate Bella’s diseased marrow. However a side-effect from long-term immunosuppression is it allowed the BK virus which lay dormant since Aug 8/17 to become active/symptomatic giving Bella much grief with haemophagic cyctystis). Thus, Bella’s marrow is currently myeloablative. Which will explain her extreme lethargy in the coming months & possibly over the year(s) to come.

This week, due to the changes in her demeanor & cold-like symptoms developing, the infectious & oncology team have decided to take action as the CMV (Cytomegalovirus) virus has entered her blood. Previously, it lay harmless in her saliva.

CMV is a common virus in the same family as herpesvirus, and it can infect anyone. Once infected, your body retains the virus for life. Most people don’t know they have CMV because it rarely causes problems in healthy people. But if you’re pregnant or have a weakened immune system, CMV is cause for concern. There was reason for concern as our Consultant originally nominated my stem cells because I had been exposed to CMV & would therefore pass the CMV immunity onto Bella post BMT #1. Futoshi had not been exposed. CMV can lead to pneumonia like symptoms if it escalates. 😱😨😫

Thankfully, there are several different ant-viral treatments available! 😁The oncology team have chosen to commence Bella on Foscarnate (which does not cause immunosuppression). She will remain on this anti-viral until it no longer is detected in her bloodstream.

Today her counts are:
Neuts= 2.42, WWC=3.8, PL=47, Hb=107. They are holding her platelets even improved from 41 to 47 which indicates her bone marrow is actively creating it’s own cells! Woot! Woot!

As we move from week to week, Team Bella does approach road blocks.πŸš₯🚧🚧πŸš₯ CMV will push back our discharge date but that’s fine. These ‘blips’ in our journey does not deter us from getting to that finish line. Steadfast we stand. I can smell discharge & freedom in my veins.

Team Bella is nearing our goal. Yes, she is exhausted. 😣 That’s probably an understatement.

We are doing things on her terms. Giving Bella back control. Self dignity because this journey it breaks you down, over & over again & again. But what doesn’t kill you, can only make you stronger.πŸ˜‰πŸ’ͺ

As they say, “You can scream. You can cry. But you can NEVER give up” Hence this is the reason why I made, “Never give up” our war-cry!

Team Bella : Never give up πŸ’ͺπŸ‘ŠπŸŽ—πŸŽ—πŸŽ—πŸŽ—

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