Relapse Journey

Side Effects and Exhaustion: Day +8, BMT #2

Team Bella Update:
Pre-B ALL Relapse, BMT #2, Day +8 (day 195 since relapse ).

This has been the most exhausting week for Team Bella. She has been so debilitated due to the diagnosis of hemorrhagic cystitis caused by a number of contributing factors: BK virus, cyclophosphamide, TBI etc thus exacerbating the condition.

This bladder infection has caused so much sleep deprivation & discomfort that I could categorically say, it tops our list as one of the worst side effects of treatment thus far. Beating PANCREATITIS. That says alot about the severity of her symptoms. 😱😩

Hemorrhagic cystitis is the sudden onset of hematuria combined with bladder pain and irritative bladder symptoms. Hematuria is blood in the urine. The amount of blood can range from a minute amount that occurs occasionally to frank bright red blood that occurs continuously.There are a variety of causes of hematuria.

Haemophagic cystitis is common in transplant patients. Symptoms include:- urgent need to frequently urinate; extreme pain associated with passing blood clots; inflammed groin area; itchiness & sensitivity over a prolonged period. The extended length of the cyctistis is due to her neutropenic state. πŸ˜‘ Once her body creates neutrophils & white cells she would be able to clear the virus. For now she relies on medical treatment to help fight it. 😣

Bella cried in this picture because I had asked her to take a bath. She said, “I can’t mummy. I always bath with Olivia & if you make me bath, it will remind me of Chibi. I will get sad & it’s boring without her!”

Treatment consists of loading the body with high volume, slightly akaline fluid (around 110ml) bi-carb added for Bella to flush out the sepsis. Akaline water helps to reduce the sting when she passes urine. It has improved a great deal over the past 4 days. Clots have cleared & her urine is clear with only minute traces of blood.

However, this did come at a cost!

Sunday 1/10 Bella (fasted) & we were sent to theatre for catheter insertion. A catheter would potentially allow her to pass urine more easily without having to physically sit on the toilet. However, we were sent back to our room as there was no catheter available? 😣 It was apparently a ‘special order’ item & the resident doctor was not aware of this. To her credit, she did run to Royal Women’s & RMH to obtain one. She located a catheter (12 inch) but not the ideal irrigation type they required. The irrigation catheter allows the nurses to flush her bladder regularly.

By 11.30am we were back in theatre. The urologist would flush out her bladder first & insert the catheter. Simple procedure really, but the catheter insertion needed to be done under GA as previous attempts failed on the ward. Bella was too alert even with midazolam. She’s a very light sleeper! 😴

FutoshiΒ & I were called to theatre recovery after 45 mins. The procedure had been completed. Being a Sun, theatre was mostly deserted. So I recognized Bella’s scream immediately as I entered recovery. It was gut-wrenching & heart-breaking even for a veteran oncology mum to listen to. 😣. I knew how distressed she was! NB: Bella very rarely cries after theatre. She generally recovers well even post surgery.

When I arrived I immediately requested a review with any one of the doctors available (including the anaesthetist), to remove the catheter. They wouldn’t do anything as our oncologist needed to make the decisions. We wait some more 😣

CT

Following the flush & insertion, it appeared Bella’s groin was obviously quite inflammed so having the foreign tube inside exacerbated her pain. It caused spasms which were painful & they’d cycle every 3-6 minutes. 😱
She lay there in pain for 5hrs.😣

You could almost equate it to labour pains without the epidural 😱. At one point she looked up at me and asked, “Am I going to die mummy?”

I told her no. Of course not!! We have skirted past the mortality discussion in the past but she has never been so direct. I knew at that point, she was enduring excruciating pain.😱😭

WTF…my 8 year old lay there in such pain but the medical team could not manage her pain!? We were in a hospital 😷😬

I felt HELPLESSS. I tried to advocate for her but it fell on deaf ears.😣

The theatre nurses really struggled. Several times when I requested grading up her analgesia & giving her clonadine or lorazapam, the request seemed to be too hard. I told them to check her charted meds. At one point I went down to the ward looking for the oncologist & later on Tosh went down to look for our pm nurse because the theatre nurses were hopeless with the pumps!

So we waited some more until the oncologist arrived. He told us Bella needed to keep the catheter in until they completed an ultrasound to see if she had any more blood clots.😯

Another 1.5hr passed. Finally the sonographer arrived & carried out the ultrasound. We waited some more for the images to be sent to the oncology team to be reviewed.πŸ˜‘

At 5pm, we finally moved back downstairs to Bella’s room.

Doctors arrived to inform us Bella’s ultrasound came up clear. No blood clots! So the nurse removed the catheter. In 5 seconds flat. 😊

Was it necessary for Bella, to endure the long period of pain? I don’t think so. If I had known what I do now, I would have physically removed the catheter myself.😬 It was almost torture what she went through. Would the doctors allow their family to endure pain at great lengths with such intensity, I highly doubt it.😫 Set aside the fact that Bella is so physically deconditioned as a result of treatment.

Today her cyctistis has improved with less spasms but the itchiness & pain is still present. This could also be an indication of mucositis (internally in her gastrointestinal lining etc 😣).

Her headaches, abdominal pain is still present. Gut wise, things are improving! She is still on TPN but tolerates the introduction of small easily digestible foods. Her skin is dry & peeling most probably from TBI (Radiation). Dark colouration to her skin is a result of Bulsulfan.

Good gracious me, after the week Bella went through, I feel so honoured & blessed to be her mother. My little WARRIOR & my HERO.

Team Bella : Doing it tough but we’re built tougher! πŸ’ͺπŸ‘ŠπŸ’ͺπŸ‘ŠπŸ’ͺπŸ‘ŠNever give up!

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