Relapse Journey

Day 48

Team Bella: Medical update
Day 48, ALL pre-B, Standard Relapse

Post induction cycle:
Bella has had another big start to the week. Mon 8/5/17 she went into theatre to have her Hickman surgically inserted. Three lumen put at chest sight. We have never had a Hickman-only a single port. Transplant will be intense with far more toxic medicines & therapies used so she needed the “Ferrari” version of a central line.😂

So thankful the surgeons could put the 3 lumen (central) line instead of just 2. The HICKMAN is a central line access her central vein instead of tempoary peripherals on her arm & legs which can easily ’tissue’ smaller veins & cause all sorts of complications for oncology patients as you can see from Bella’s medical history.

New NG tube inserted in theatre as previous one had blocked (due to feeds going in @10ml/hr) to not exacerbate pancreatititis.

She also had a LP intrathecal Methotrexate (MXT) & IV MXT over a 36hr infusion through her lumen coupled with potassium & glucose hydration to FLUSH out this cyctotoxic chemo entering her body this week.

I need to be aware of possible side effects (MXT toxicity, mucositis etc). Instead of using Peg-aspariginase, they are using Erwinia due to her pancreatititis. Erwinia will be given in 6 doses, from Tue night & every 2nd day until dose is completed.

Yesterday did not come without medical issues Bella reacted to – lips puffing up, mottling all over her legs/arm, nausea ( she did 2 large vomits), -which they charted good ol’ zyrtec resolved (antihistamine). Bella also had continued severe abdo pain, sore eyes (from the chemo leaching out, which they will give her eye drops to ease discomfort today).

Doctors have also truncated her IV bactrim (due to advetse affects on her pancreas) instead using Ceftazidime as the antibacterial.

Everyone is now mindful of Bella’s low tolerance to many medical issues including fluid overload. So nurse in charge came to discuss this with me .

Docs are now more on top of things-thankfully! Checking fluid load, nephrotoxicity of the chemo drugs, albumin levels, enzyme levels (amylase & lipase- pancreatic enzymes) to ensure her pancreas is not inflamed further. The pancreatitis is causing her much distress as abdo pain had been chronic, acute & severe.😣😫😱😩

TPN (total parenteral nutrition) & lipids commenced tonight as we need to increase Bella’s weight. It is given through IV to allow Bella’s pancreas to rest. It is critical leading into BMT. Higher mortality rate for kids who are under or or overweight. A good weight provides a patient’s body with the best physical chance to deal with transplant.

Team Bella: Doing it tough. What doesn’t kill us only makes us stronger. Never give up!

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