May you keep blessing their family with your prayers and encouragement.
Thank you.
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February 6 2017
From Renee's mum, Harriet
When we started out on this journey the first 7 months we functioned on adrenaline, our days and nights filled with lots of "moments" not possible to plan too far because we were only capable of dealing with what was infront of us at the time literally but instead getting through moment to moment whether sitting on the floor trying to convince Renee to take her medicine after she threw it up twice before, late night drives into ED because temperatures too high and protocol is take Renee into hospital to check she hasn't picked up an infection, blood and or platelet transfusions (we've lost count), stomach cramps and the multitude of side effects, chemotherapy regime which last anywhere from 5 mins to 8 hours. Looking back we are thankful there was little time to think instead we were never left in a place in our own minds that would allow darkness a foothold of us... knowing that God is a God of Yes and Amen, how could we not hold onto Him for dear life and never let go?. Our faith that remained in tact but when we couldn't pray we are really thankful for the people in our lives that have covered us in prayer, standing in the gap for us, Renee most of all. Nae has had alot of good days following Christmas it's the first time since her diagnosis we have as a family experienced normality at this level. Her nose bleed last week we were reminded of how things can quickly change & it was difficult because there wasn't anything we could do to take her pain away, she had to just go through it and the disappointment her siblings felt for her, then anger settled in because we felt so helpless it's taken a week to process those thoughts. She bounced back quickly we learnt that she needed a blood transfusion during her clinic visit which perked her right back up and she returned to her normal self again by the time she was discharged. Renee has continued to do well following chemotherapy last week Thurday, her oncologist confirmed she has until the end of February of weekly visits for clinic and chemo then she will start maintenance which which is chemo every 28 days for two years. Her hair has almost fallen completely out this time around so hoping the regrowth will happen quickly given treatment is weeks apart. The MRI, doctors say the feature in her brain is not worrisome and specialist say it is more than likely to be developemental but will monitor it throughout treatment.
“Courage is not the absence of fear, but rather the judgment that something else is more important than fear.” – Ambrose Redmoon
Hebrews 11:1, Now faith is the substance of things hoped for, the evidence of things not seen. ."
February 6
Lumber puncture IT methotrexate - Nae in recovery still holding her cat purse waiting for her to wake before going up to the ward for chemotherapy
February 10 2017
Day 37 Delayed intensification - Renee had a blood test Wednesday that came back fine. Thursday just minutes before Renee was scheduled for a lumber puncture she had a heavy nose bleed , the ear nose and throat specialists were called into assess Renee & decided to cauterise her nose while under sedation which helped stop the bleed. She was given a platelets following the nose bleed and a blood transfusion, 60mls into the transfusion Renee temperature went up and the transfusion was stopped in fear that it may have been have contaminated.Thankfully the results came back negative howevera second blood test showed nutrifils had dropped to zero making Nae fibrile nutripenic (no immune system). Awaiting results from cultures taken prayfully it's no more than a cold. Fevers have continued through the night.😷😔
February 11 2017
Day 39 Delayed intensification - last 24 hours Renees temperatures have steadily come down & she has had 2x nose bleeds in the other nostril which was very light good sign platelets are working. She's had 2x platelet and 1x transfusions during this stay. There seems to be a reoccurring pattern with nose bleeds that they are brought on when Renees platelets reach 30 or lower. It's not common in patients with this type of Leukemia and doctors say that it may just be unique to Nae so frustrating at least we may be able to put a preventative measure in place (hopeful)Trying to keep track of Naes courage beads hasn't been easy, she is already up to her 4th necklace and counting. Lucy one of the many nurses we've come to know has kindly offered to go through Naes records so we keep an accurate tally of Naes journey and a safe keep for Renee in the years to come.She has had 11x X-Rays, 6x CT scans, 1xMRI and 1x ultrasounds between May16 - Jan17. It's crazy to think and she still has 2years to go. In saying that she's doing loads better following antibiotics and transfusions. She's been given the green light to go home with her port still accessed so last Cytarabine (chemo) injection and antibiotics can be administered by a community nurse at home tomorrow and Monday clinic when she's next back in for day stay.
February 13, 2017
Day 41 D.I - temperatures have continued to fluctuate. Renee was home for the weekend however during clinic this afternoon while waiting for bloods results to come back her temperature reached 39, despite being well within herself she was admitted and back into the ward for observation and on antibiotics via her port. Prior to going upto the ward Renee had a chest X-ray to check the infection hasn't returned. Praying all comes back clear!Renee is just 3 weeks from Maintenance so prayfully, prayfully Renee will be home tomorrow. The last week has been difficult, we find we are always in auto pilot mode. It's moments like these we are forced to stop which is not always necessarily a good thing. Thankful that when nothing seems to make sense we know that you Lord remain the same yesterday, today and tomorrow - in you we trust❤️🙏🏽
February 16, 2017
Day 43 Delayed intensification - Xray results came back yesterday which show vague streaking on Naes lungs confirming a lung infection. She has responded well to the antibiotics thankfully it was picked up quickly🙏🏽 She was very quite yesterday, platelets and haemoglobin were both low which meant another transfusion yesterday ( making 5x of each during this stay inclusive of last week) , By the evening energy levels were up, so was her appetite and was back to being very playful asking to take selfies with her dad and I for valentines lol💕She was able to have chemo today as the meds Vincristine and persparagse are not count dependant meaning Renee is still on track for maintenance (thank you Lord) - given Renee has not had a fever all day and throughout the evening she will be discharged tomorrow yay!! Plans to go camping this weekend not likely to go ahead to her great disappointment and her and her siblings but we we will make up for it real soon❤️
February 17, 2017
Day 44 - spoke too soon, Renees temperature sitting between 34 - 35 whilst it was low not necessarily a good thing possible signs of lack of oxygen and blood flow. But Renee again remains well within herself other than her body temperature everything checks out fine doctors are monitoring closely as precaution.More platelets transfused today to keep counts up above 30. prevent nose bleeds short term fix hopefully as Renee heads into maintenance the long periods between treatments her body will naturally produce higher counts. - We love you our warrior princess soooo, so, so much❤️😘😘
February 18, 2017
Day 45 - Renees temperatures (episodic hyperthermia) settled throughout the night. Her chest and cough has improved ( antibiotic Tazocin) cultures taken from her blood came back negative🙏🏽 No signs of increased work to breath the doctors were happy to discharge Renee with antibiotic ceftriaxone, to be administered by community nurse once daily until clinic next week Wednesday (via port) Nae was given another platelet transfusion as the plan is to have her platelets >50 this would see her through the weekend pray fully no issues. Renee is still neutropenic so need take extra precaution until her counts are back up again. Also given potassium supplements (for her heart) as levels were slightly low. Any spikes in fevers, prolonged nose bleeds we need to return back as soon as possible. Renee was discharged just in time to pick up her siblings from school and see all her school friends and teachers a real treat for her. A wonderful way to end a long week, all our babies under one roof.
Thank you all for your prayers, love and support. God bless you all❤️❤️❤️
