The Plan

Sam is due another bone marrow and lumber puncture. I think they are both next week.

Depending on the results she will then go to the next phase called CONSOLIDATION.

In the two month CONSOLIDATION period her body is pumped intravenously with high doses of drugs she has already been receiving. The doses are so high that it is done in hospital over a 48 hour period. She receives these drugs under total supervision and observation in case anything goes wrong. At the same time she is given a drug called Leucovorin Rescue to minimise negative side effects. The protocol is such that the 48 hours are administered on Day 8 and 9 then she is given until day 22 and 23 before they give it again. Dr Greenwood said that day 22 may be actually as long as a month (or longer) after day 8 depending on side effects. So it isn’t like the lovely school where I work where we realistically number the days until terms end. They are simply the “ideal’ day that the drug would be safe to be readministered. Potentially, all going well, Sam WILL receive these high dose treatments on Day 8/9 then 22/23, 36/37, 50/51 and we will have lovely sun-filled days languishing on lounges sipping fine tea. However, things could be delayed, things could go wrong, things could be slowed down.

The side effects include things like:conjunctivitis, sore mouth, platelets top, low white blood, rash, further hair loss, abnormal speech, confusions, memory loss, fatigue, infection, fever, chills, bleeding, mouth ulcers, difficulty walking, lung problems, shortness of breath, wheezes, diarrhoea. Last week Sam thought she was losing her memory on the small dose. She told Reid on Friday that she was at Change last night but actually she was with Amy and Joel. She also lost her new cardigan and had no idea where. (That would be SO normal for me). She found it eventually! They took some tests at the hospital but decided she was fine to continue treatment. She has also had mouth ulcers which Dr Greenwood thinks are terrible. Our positive girl responded that they really weren’t that bad!!!

Sam is also undergoing other tests now for her voice. Today she has an ultrasound, next Monday an MRI and then an appointment with the ENT specialist after Easter. If things don’t improve she may require a vocal cord operation. But I have no idea when. I think they want to give it twelve months to return of its own accord. We are praying and believing that it is already on its way back.

After Consolidation the Doctor looks at the molecular tests. One test is done after each bone marrow. They look at the last two tests. We need to be praying that Sam gets a – (negative) for both tests. If there is a + (positive) she will then need a bone marrow transplant.

Neither Jack nor Emma are a sibling match so it is complicated if she needs a transplant. Dr Greenwood said that her body could reject the transplant from an outside donor and it is far from straight forward when it isn’t sibling. In fact she would need to go to the Vincent Hospital and change doctors because RNSH only do sibling donors. Even if it goes well she will suffer extreme fatigue. So the future is uncertain. And even though Sam is a total champ and we are in complete faith we do have some hurdles to jump.

Also please pray for another Sam who has AML and has just had a bone marrow transplant. He is having terrible nausea and fatigue. He is 19 and his family all know Jesus. We met them in 12A and are believing together for the complete healing of the two Sam’s.


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