Help Poppy Grace Beat Leukaemia

 

***Update from Poppy's Mums 

Poppy has just finished her first 33 day intense treatment. She’s been on a rest from chemo which means she’s had time to recover from the harsh chemicals before her next protocol treatment started. It has been wonderful to see Poppy nearly back to her old self lately.

We have been in hospital with Poppy for 6 weeks where we have had a lot of wins but also a lot of scary side effects from the treatment. She has been very unsettled recently and she is now on morphine for pain relief. We feel blessed and grateful for all of the support around us in J1 ward at John Hunter Children’s Hospital and from all of our family, friends and our amazing community.

We have had some reassuring results come back from Poppy’s day 33 bone marrow results. These results let us know how the leukaemia is responding to the chemo and what comes next for her treatment plan. With a specialised test they found 0.05% leukaemia cells within 100,000 of Poppy’s cells. This is a great result. She still has many months of treatment before she can go to transplant but these results are super amazing for this point in the treatment- she’s a superhealer!!! The fact that transplant is a likely option is wonderful!!! We are over the moon and just in awe of her strength, resilience and bravery.

We recently started a new chemo treatment block which goes for 6 weeks then we move straight into another treatment. Because the results are looking good, the doctors will now contact the Westmead Children’s Hospital transplant team to let them know we will be working towards transplant where we will be in Sydney for 3 months or more if all goes to plan.

This process is long from over and there are still many challenging hurdles to jump over so please keep Poppy Grace in your prayers. We are praying that Poppy lives a long, happy, healthy life cured of leukaemia. Thank you from the bottom of our hearts for your love, care and support.






Update 9.11.2021

Happy Tuesday everyone! We hope you've all been having a lovely week so far. We managed to go home for 3 nights and now we're back in J1 with Poppy needing more blood transfusions.

Thank you to all the selfless lifesavers out there that have donated blood in Poppy Grace's name!!! We are now up to 537 lives saved!

We've had people ask about donating Bone Marrow. Every 40 minutes someone in Australia is diagnosed with blood cancer. For some of them, a blood stem cell or bone marrow transplant is their only chance to live, which is the case for Poppy.

After our Telehealth meeting on Friday with the bone marrow transplant team in Sydney, they said Australia is in great need of Bone Marrow Donors. When you donate blood, you can fill out a form to become a marrow donor. Here's the link for more info: https://www.lifeblood.com.au/organ-and-tissue/bone-marrow. Please consider it if you are able; it is a fantastic way to be a literal superhero.

We have been stopped by strangers frequently this week, asking if we are Poppy Grace’s mums, and asking how she is. You have no idea how much this warms the cockles of our hearts. Thank you for taking time out of your day to think of Poppy, it really lifts our spirits. To all our cheerleaders who have been donating to our gofundmepage, we are ever so grateful. This situation has made us realise how many truly wonderful people there are out there. https://www.gofundme.com/.../help-poppy-grace-beat...

Monday 1st November– Day 20 of Extended Consolidation Part B Protocol Chemo Treatment

Poppy continued on only one antibiotic (Meropenem) through her white lumen and was taken off another antibiotic (Vancomycin) that was causing her intense rashes. Poppy was so chatty today, it's the most she's been vocal yet, which was so good to see her so bright and happy. She is still on her nightly oral chemo for 14 days and she will be staying in hospital while she's on the antibiotics.

Poppy’s blood levels today were:

* Haemoglobin – HB 111 (95-140 normal)

* Platelets 276 (150-400 normal)

* Neutrophils 0.3 (0.8 – 8 normal)

Tuesday 2nd November- Day 21

Poppy is 5 months old today! We had a visit from the OT's (Occupational Therapist's) today to see how Poppy is progressing. She had a fun time playing with the OT's for 25 minutes. She needs to keep working on her shoulder and torso strength so she can start sitting up. It's a little tricky when oncology kids are in hospital and on chemo as they get tired a lot easier and can fall behind with their development. She was super exhausted and had a massive sleep afterwards.

Poppy’s blood levels today were:

* Haemoglobin – HB 108 (95-140 normal)

* Platelets 239 (150-400 normal)

* Neutrophils 0.3 (0.8 – 8 normal)

Wednesday 3rd November- Day 22

Today Poppy is booked in for her lumbar puncture and intrathecal chemotherapy (chemo into spinal fluids). They stopped her antibiotics and she had to fast for 4 hours prior to surgery at 1:00pm. It was the quickest one yet, Poppy recovered well and ended up back in her room (12) in J1 behind the nurse's station.

Poppy also had another chemotherapy called Cytarabine through her central line. She has this one for 4 days in a row, and then she has a 4-day break then another 4 days on. They aim to give this at the same time each day.

Poppy was observed for a few hours back in her room in J1 and she was a bit unsettled. Apparently, the bigger kids that get these procedures say it can give them a headache due to some of their spinal fluid being taken so they have to lay down until their spinal fluids build back up. It’s difficult because she can’t tell us if she has a headache so we can really only comfort her and advocate for her to have pain relief when it is necessary.

Poppy had her bloods done in the morning and her results were:

* Haemoglobin – HB 102 (95-140 normal)

* Platelets 220 (150-400 normal)

* Neutrophils 0.7 (0.8 – 8 normal)

Poppy was well enough to be released and go home. She was a bit unsettled with pain from the lumbar site but she had a good sleep through the night.

Thursday 4th November- Day 23

We had a meeting with Poppy's Oncologist Dr Maddie today. We received some wonderful news from her bone marrow sample that was taken the week prior. The last bone marrow sample that was done in her first protocol on Day 33 had two types of leukemia markers that were tested. The previous results showed 4 in 10,000 and 5 in 10,000 cells were leukemia. This time it showed 0 cells in 10,000 and 1 in 10,000 cells were leukemia. This is wonderful news! This means Poppy is in a good position moving into her bone marrow transplant. The unfortunate thing with this leukemia is it has a high relapse rate so it will come back if we don't do a transplant. Poppy still needs more chemo and another new treatment that will help treat her leukemia on a molecular level, but that is happening next month.

Poppy had a dressing change on her central line and her IV Cytarabine chemo through her central line in PODU. Then we headed home for her other chemo 6MP (Mercaptopurine) that we give her through her NG tube at the same time each night.

Poppy had a try of some pureed sweet potato, which she seemed to like for the first couple of tastes. She still isn't sold on the idea of eating another way, but she has been so interested in our food so I'm sure she'll get the hang of eating soon enough.

Poppy hasn’t been wanting to breastfeed and when she does she has been, choking/coughing with some vomiting. We reduced the amount of milk going through her nasal gastric so she can keep more down.

Friday 5th November- Day 24

Today, Poppy's Granny (Bronny) came to babysit at home while we had a telehealth meeting. Because Poppy’s neutrophils are so low, for Bronny to visit she had to be double vaccinated for Covid as well as have up to date whooping cough and flu vaccinations and wear a mask and sanitise her hands constantly while at our house. The telehealth meeting was with the bone marrow transplant team from Westmead Children's Hospital.

We received exciting news that Poppy has a potential bone marrow match. Due to privacy we don't know anything about them but we are praying they will still be fine to go through the process to help save Poppy. We aren't able to be in contact with the donor, but we are able to write them a letter, which we are so excited to do so we can thank them for giving Poppy a second chance at life. They will be going through the process early January, which if all goes to plan, we will be moving to Sydney toward the end of January.

It was great to spend the day at home with Poppy, she had a good play on her special wombat mat that was donated to Poppy from a lovely couple who make them for kids with cancer.

Poppy was a little off soon after her play time, she'd had a number of vomits throughout the day and not wanting to feed. She is on Ondansetron three times a day, which is a medication to prevent nausea and vomiting, unfortunately it hasn't been helping.

As the night went on, she had been crying and inconsolable. She seemed to be in pain with lots of choking, which could be a sign that she has mucositis in her throat and digestive tract again, which is apparently very painful. 

Saturday 6th November- Day 25

Poppy woke up happy and talkative. It was a lovely day, so we went for a walk with Poppy in the pram (with her pram cover on) to one of our local coffee shops to grab some takeaway coffees. We kept Poppy away from other people while Carly ran in to order as Poppy is still very susceptible to catching viruses due to her immune system being compromised.

Poppy spent most of the day sleeping on our laps. We tried her on some sweet potato again which this time she wasn't that keen on.

When we changed Poppy's nappy, we noticed that her urine had a pink tinge to it. We called Ward J1 to let them know, we were waiting for a call back to see if we needed to go in. In the meantime, luckily, we had a yellow lid urine collection jar. We spent the next 1 hour and 40 minutes waiting to catch a urine sample!

At midnight, J1 called back to let us know they were ready for Poppy to go in to be reviewed.

Poppy had a thorough review by the Doctor once we arrived to J1. The tiny bit of sample we collected from home showed that there wasn't any blood in her urine but she had a high specific gravity reading which shows that she is dehydrated.

They decided to start her on fluids right away and asked for us to catch another urine sample for testing. We patiently waited, ready to catch the next urine sample but gave up at 2:15am. Unfortunately, Poppy was too dehydrated, and we needed to get some sleep.

Sunday 7th November – Day 26

We woke at 8am, we managed to successfully catch a urine sample to send off for testing.

Poppy's nasal gastric tube ended up being blocked at the entrance port where we need to put medicines down while she is on the feeding pump. This meant it had to be pulled out, while she was awake and she would need a new one put in. We decided to give her a bit of a rest and only put it back in when she was due for her next antifungal medicines at 2pm. She was pretty happy to not have it in for a few hours.

She got a new nasal gastric tube inserted, which she absolutely hated. The poor nurses have to hold her head while they put a tube up her nose and goes down the back of her throat and into her stomach. Poppy was very offended and upset.

Poppy already had a sore throat, presumably because of the mucositis, and then the irritation associated with the nasal gastric tube being put in caused her to develop a cough. Having a cough meant she needed to have a COVID test. Which also means, we are all locked down and isolated in our room until the test comes back.

Poppy had also taken on a fair bit of fluid which made her puffy but her urine sample showed she was still dehydrated even though she had been on fluids overnight. Her blood tests showed she was low in a blood product called albumin. Albumin helps keep fluid in your bloodstream and helps it from leaking out into other tissues. They ordered for Poppy to have an albumin transfusion through the night, and luckily her COVID test came back negative.

Poppy’s blood results were:

* Haemoglobin – HB 86 (95-140 normal)

* Platelets 170 (150-400 normal)

* Neutrophils 1.0 (0.8 – 8 normal)

* Albumin 17 (25-46 normal)

Monday 8th November- Day 27

Poppy had a huge sleep overnight. She slept from midnight to 9am, which is massive for her, and a little concerning. She was still off wanting to feed, and each time she fed she would vomit. She was still on her antinausea medication three times a day but it wasn't helping. We had to turn her nasal gastric tube feeds right down from 15ml/hour to 10ml/hour. She is normally on 27ml/hour at home, but currently she is unable to keep anything in.

We were moved rooms from the Covid isolation room to another room we hadn't been in before, it is really beautiful and much quieter so Poppy can rest.

Poppy has her next four days of her IV Cytarabine chemo through her central line start today, plus her afternoon chemo 6MP (Mercaptopurine) that we give her through her NG tube at the same time each night.

Poppy's blood results came back and her albumin was still low, even after her transfusion. She needed some red blood cells because her haemoglobin was 64 which caused her to be extremely pale and exhausted. She had some blood ordered which arrived in the afternoon for a transfusion and because her albumin was still low, they would review her levels the next day to see if she still needed some albumin to be transfused.

Poppy also had low potassium levels, so they changed her IV fluids to contain potassium to bring her levels back up to normal.

Poppy started getting high blood pressure, she then started on her blood transfusion. Within a couple of hours, she was much brighter and so much pinker. It's so surprising how much colour comes back when she gets a blood transfusion and she seems to be much happier with a lot more energy to smile and play.

Poppy had a four large vomits throughout the day and night. She also developed a rash over her chest and face, which slowly went away throughout the night. She drifted off to sleep around 2am.

Poppy’s blood results were:

* Haemoglobin – HB 64 (95-140 normal)

* Platelets- 81 (150-400 normal)

* Neutrophils- 0.3 (0.8 – 8 normal)

* Albumin- 17 (25-46 normal)

Tuesday 9th November- Day 28

Poppy woke up happy, laughing and full of energy. She had a great play with her toys sitting up and seemed so much brighter after her blood transfusion. We kept her feeds low overnight and throughout the day to help prevent her from vomiting.

She had a visit from the dietician, and we are altering her feeds to increase the protein to help with her albumin levels.

Poppy’s albumin levels are lower again today at 16. She is currently having a 4-hour albumin transfusion (albumin is a blood product from plasma). Hopefully, that will help her rehydrate her veins and prevent any fluids from leaking into other tissues.

Poppy's platelets are starting to drop right down and the doctor said she would most likely need a platelet transfusion tomorrow once her blood results come back. Each day she is admitted in J1, she has bloods taken from her central line at 6am each morning to be sent off for testing in the lab located in the hospital. Then the team of doctors can review her bloods each day to see if there's anything they need to treat or get ready for.

Poppy’s blood results were:

* Haemoglobin – HB 129 (95-140 normal)

* Platelets- 39 (150-400 normal)

* Neutrophils- 0.7 (0.8 – 8 normal)

* Albumin- 16 (25-46 normal)

Until the next update can we thank you all again for your kindness and support. Thank you for reading this post and for caring about Poppy’s progress. It feels like we are on this journey with you, as you are all so supportive and loving towards Poppy. We are so lucky to have so many beautiful people out there praying and sending love and support our way. It makes each day easier knowing you care.

While we are thanking people, John Hunter Children’s Hospital needs a gold medal! Sending huge amounts of gratitude to the angels in Ward J1 who have treated us like family and created such a warm loving home for us, you are phenomenal humans! To the clearheaded darling hearts in PICU (Paediatric Intensive Care Unit) we appreciate you more than you know! To the amazing staff in PODU (Paediatric Oncology Day Unit), we adore you all! Thank you, thank you, thank you.

 

Update 16.1.2022

 

Hey gorgeous ones. We received some bad news on Tuesday and we needed to take some time to process it all before we let you guys know what was happening.

You might have known we were getting ready to move to Westmead Children’s Hospital this week for Poppy’s bone marrow transplant. That has been postponed. 

On Tuesday 11.1.22 Poppy had a routine lumbar puncture and a bone marrow sample taken for the end of her Blinatumomab cycle and to check her Leukemia levels before heading into transplant. A few hours later we were sat down and told Poppy had relapsed in her (CNS) Central Nervous System as they found high levels of Leukemia in her cerebral spinal fluid. The Leukemia was never present here before. It was like diagnosis day all over again and it left us feeling hollow and defeated.

The lumbar puncture spinal fluid sample showed 400 Leukemia cells per ml. They needed her to have a MRI on Wednesday 12.1.22 to check if there were any lumps or lesions on her brain or if there was pressure behind her eyes. When Leukemia is in the spinal fluid it can cause seizures and can cause her eyes to turn and can affect her vision so we have to watch her carefully. It also comes with nausea, vomiting and headaches. Luckily the MRI showed it's only inflamed in her brain so that is positive as there are no lumps or lesions.

So on Friday 14.1.22 Poppy had her first lumbar puncture treatment to treat the relapsed Leukaemia with 3 different drugs injected into her spine. She had Methotrexate, Cytarabine and a steroid Hydrocortisone. She will have 2 of these triple intrathecal lumbar punctures every week now on Tuesdays and Fridays with the aim to bring her Leukemia levels down to zero. When she has two zero results in a row we can move to Sydney for the transplant.

We were able to go home Friday, but we were back within 5 hours because she had a high temperature, high heart rate shooting up past 230 and was vomiting. Because of the temperature, they had to isolate us and we all got COVID swabbed and Poppy got swabbed for 14 different viruses and put on antibiotics. 

Luckily they all came back clear but we’ve been admitted to J1. 

Being under 3 general anesthetics this week has really knocked her around. She needed a blood transfusion yesterday which has brought her heart rate down. Again, we are so grateful for those of you out there continuing to donate blood. If you’d like to donate blood, head to https://www.lifeblood.com.au/blood to book a spot and when you arrive ask to have it logged in Poppy Grace’s lifeblood group.

The good news is on Friday when they checked her spinal fluid it had 178 Leukemia cells per ml, down from 400, so that is really positive. It means that the Leukaemia is responding to treatment and isn’t resisting the chemo at this stage. So best case scenario, she has a few more weeks of lumbar punctures, which she’ll have on Tuesdays and Fridays and hopefully that’ll clear out the Leukaemia and we can get to Sydney for the bone marrow transplant. 

Her oncologist (who by the way, is the most amazing, knowledgeable, dedicated, compassionate human) will present Poppy’s current case with the Westmead transplant team to the Leukemia board on Tuesday. They will discuss 3 treatment options moving forward to see which they all think will be the best plan to try and get her to bone marrow transplant. 

It’s very difficult seeing her in this much pain and so sick and it’s certainly taken it’s toll on us both as we really weren’t expecting this relapse. She has been so happy and has been developing so well and it has been a very overwhelming piece of news to try to overcome. It has rocked all of her beautiful nurses and people involved in her treatment as she had been progressing along and handling it all. 

The comforting part of this journey is the support we have received from the J1 Mums, the treatment team, our beautiful family and friends and of course you guys! We genuinely appreciate every kind word, every prayer, every donation https://gofund.me/17d20bd6, every blood bank visit. Thank you for being there for us and for being so invested in our gorgeous Poppy. We are praying that this is just a minor setback; that Poppy will be cured of Leukemia and will live a long, happy, healthy life. 

We are grateful, we love you, thank you all.  


Update 3.2.2022

 

Hello favourites!

Whilst this week has been ridiculously challenging with a visit to ICU, X-rays, ECGs and ultrasounds there have been many golden moments. Again, if you are watching the video with your little ones, we just want to warn you that Poppy is unwell in some of these videos and that may be confronting for your cherubs. Thankfully she is feeling much better now and we thank all of you for your continued prayers, support, donations https://gofund.me/17d20bd6, love and kind words.

Firstly, to all you amazing blood donors (ahem, life savers) out there please give yourselves a huge warm hug.  897 lives have been saved now under Poppy Grace’s Lifeblood group! NSW have been the most dominant donors with 852 lives saved. If you are thinking about donating blood, please consider booking an appointment here https://www.lifeblood.com.au/blood and ask to record your donation in Poppy Grace’s Lifeblood group. Blood stores are critically low, and Poppy has received platelets 3 times this week, red blood cells twice, and albumin twice. Thank you amazing ones for continuing to add to the dwindling blood supply.

This week Poppy has been continuing to work through the IntreALL protocol and its nasty side effects. We spent some time in ICU but Poppy has improved dramatically since then and we are extremely grateful. Here is what our week looked like:

Monday 24th January 2022

Day 5 IntreALL Protocol

Today Poppy had her last doses of Dexamethasone steroids for now. As they make her irritable we were happy to see the end of them. Poppy finally had a breastfeed her first since early Friday morning. Her mouth ulcers are still prominent as are the sores on her lips so the breastfeed was a real accomplishment.

The doctors switched Poppy from Morphine to Fentanyl NCA (Nurse Controlled Analgesia) which was fantastic as the Morphine was making her extremely itchy and we had to cover her hands as she was tearing at her face.

Poppy is still vomiting and needed to be reviewed by the doctors overnight as her oxygen was dropping and she had Bradycardia (a slow heart rate).

Her blood counts are continuing to decline due to the high dose chemotherapy:

* Neutrophils which are responsible for killing and digesting bacteria and fungi to help the body fight infections and heal wounds were at 0.1 (normal range is 0.8 - 8.)

* Platelets which are responsible for clotting blood were at 53 (normal range is 150-400)

* Haemoglobin (Hb) responsible for carrying oxygen in your body were at 87 (normal range is 95-104)

Tuesday 25th January 2022

Day 6 IntreALL Protocol

Poppy had her lumbar puncture in main theatres today as the anaesthetist was very concerned about putting her under a general anaesthetic due to her vomiting and low oxygen overnight. Vomiting under anaesthetic is dangerous as you cannot swallow, and vomit can make its way into her lungs which can be fatal. In main theatres there are more people and resources to cope in an emergency.

She had Methotrexate (chemo), Cytarabine (chemo) and Prednisolone (steroid) injected into her cerebrospinal fluid (CSF). The CSF sample taken came back with no malignant cells again this time! Poppy is a miracle healer!

Poppy vomited up her nasal gastric tube and due to the mucositis that she is suffering with she was placed on TPN (Total Parenteral Nutrition). She is now being fed nutrients through her central line. It was deemed too risky to put another nasal gastric tube down her throat whilst the mucositis is so bad as it could cause bleeding and trauma to her GI tract.

She also has Pancytopenia which means she has a deficiency of all three cellular components of the blood.

* Neutrophils = 0.0 (normal range is 0.8 - 8.)

* Platelets = 47 (normal range is 150-400)

* Haemoglobin = 88 (normal range is 95-104)

Wednesday 26th January 2022

Day 7 IntreALL Protocol

Poppy had some happy moments being chatty, playing and having books read to her amongst the vomiting. Cyclozine a anti-nausea medicine was charted for her which helped reduce the vomiting slightly. There is blood in her vomit now and she will need platelets.

* Neutrophils = 0.0 (normal range is 0.8 - 8.)

* Platelets = 35 (normal range is 150-400)

* Haemoglobin = 88 (normal range is 95-104)

Thursday 27th January 2022

Day 8 IntreALL Protocol

Poppy had a difficult day vomiting so much and dry retching up bile. She was given platelets which stopped the blood from coming through in her vomit. She was also given red blood cells to try to combat her Tachycardia (fast heart rate). Poppy’s lactate was 2.5 (normal lactate levels are less than 1.0). Lactate is a marker for sepsis and other conditions such as cardiogenic shock. Poppy was given Tazocin a broad-spectrum antibiotic to cover her for infection and was also given a fluid bolus to try to combat her high heart rate.

* Neutrophils = 0.0 (normal range is 0.8 - 8.)

* Platelets = 24 (normal range is 150-400)

* Haemoglobin = 86 (normal range is 95-104)

Friday 28th January 2022

Day 9 IntreALL Protocol

Friday began with a rapid response and a team of ICU doctors came to see Poppy due to her high heart rate and high blood pressure. It was suggested that Poppy have an Xray to look more closely at her stomach and her pain needed to be managed better. The ICU doctors think that Poppy is stoic and often doesn’t cry when in pain, but the pain shows up in her high heart rate. They recommended a background of Fentanyl to be applied and Panadol every 6 hours. Meropenem another antibiotic was also started to cover Poppy for infections.

* Neutrophils = 0.0 (normal range is 0.8 - 8.)

* Platelets = 49 (normal range is 150-400)

* Haemoglobin = 112 (normal range is 95-104)

Saturday 29th January 2022

Day 10 IntreALL Protocol

Another day that began with a rapid response. Poppy’s high heart rate and blood pressure were concerning. A surgical team came to examine her stomach and suggested another Xray and an ultrasound. The doctors increased her Fentanyl dose which made her very drowsy and itchy. She was charted an antihistamine for the itch and also antibiotics Vancomycin and Metronidazole to cover her for infection. Poppy was given Lasix to reduce the extra fluid in her body but soon after her heart rate skyrocketed to 220 and we had another rapid response visit from ICU doctors. She spiked a fever of 38 and her lactate was 2.1. She was given an albumin infusion (another blood product) used to replace blood volume.

* Neutrophils = 0.0 (normal range is 0.8 - 8.)

* Platelets = 24 (normal range is 150-400)

* Haemoglobin = 102 (normal range is 95-104)

Sunday 30th January 2022

Day 11 IntreALL Protocol

After a third day beginning with a rapid response the doctors decided it was time for Poppy to be admitted into ICU care. Whilst it is scary having Poppy admitted to ICU it was necessary as Poppy required close monitoring. An abdomen Xray was undertaken as well as an ultrasound. The surgical team came to visit her again as well. She also required an ECG to check that her heart was operating normally. The vomiting, high heart rate and high blood pressure continued and she was right on the edge of a fever. It was decided that she would benefit from G-CSF (granulocyte colony stimulating factor) injections to help her grow some white cells. Poppy’s NCA (nurse controlled analgesia) was changed from Fentanyl to Hydromorphone an opioid-based medicine to try to ease her acute pain without the itchiness.

* Neutrophils = 0.0 (normal range is 0.8 - 8.)

* Platelets = 42 (normal range is 150-400)

* Haemoglobin = 73 (normal range is 95-104)

Monday 31st January 2022

Day 12 IntreALL Protocol

Poppy woke up at 12.15am with a temperature of 38.4. She had a big bile vomit and was shaking with a heart rate over 220. She was given Panadol and we bathed her and this brought her temperature down. At 4:30am she woke again with pain and had a large vomit. She seemed to feel better and was happily playing with her nurse soon after. She was given red blood cells again later that day and it greatly improved her high heart rate. She was also given more platelets.

Poppy is now on 14 different medicines and it seems they are helping. She was even able to breastfeed at 8pm without vomiting. The medicines alone are a full-time job for her extremely hardworking underpaid nurses, it is never ending. This is what her medicine schedule looks like, bear in mind this doesn’t include any of the chemotherapy that she receives as well.

* IV Paracetamol via her central line at 12am, 6am, 12pm and 6pm. Given for pain relief and to keep fevers away.

* IV Ondansetron via her central line at 12am, 6am, 12pm and 6pm. Given to relieve nausea.

* IV Cyclizine via her central line at 12am, 8am and 4pm. Given to relieve nausea.

* IV Omeprazole via her central line at 5am. An antacid given to protect her stomach lining.

* IV Amphotericin via her central line at 8am. An antifungal medicine to protect her from fungal infections.

* IV Meropenem via her central line at 12am, 8am and 4pm. Given to treat a wide variety of bacterial infections. 

* IV Vancomycin via her central line at 1am, 7am, 1pm, 7pm. Given to kill bacteria or prevent their growth.

* IV Metronidazole via her central line at 11:30am and 11:30pm. Given to kill bacteria or prevent their growth in the stomach or bowel.

* IV Hydromorphone via her central line continuously and extra with bolus presses. Given by nurses to treat Poppy’s acute pain.

* G-CSF injections given at 3.30pm via a needle in Poppy’s thigh, 30 minutes after numbing cream has been applied. Given to stimulate the growth of white cells.

* IV Dexamethasone given when required to treat the itch caused by the opioid pain medication.

* Desloratadine an antihistamine given orally when required to reduce the itch caused by the opioid pain medication.

* Bactrim an antibacterial medication given orally at 8am and 8pm on Monday, Wednesday and Friday.

* Vitamin K given orally to reduce her deficiency at 8am on Monday, Wednesday and Friday.

* On top of this Poppy is also given TPN (Total Parenteral Nutrition) Smof (lipids) via her central line as she is not able to keep breastfeeds/nasal gastric feeds down.

* Neutrophils = 0.0 (normal range is 0.8 - 8.)

* Platelets = 23 (normal range is 150-400)

* Haemoglobin = 68 (normal range is 95-104)

Tuesday 1st February 2022

Day 13 IntreALL Protocol

Poppy woke up after a brilliant nights sleep only waking twice for nappy changes. She had a normal heart rate and oxygen saturation overnight and the nurses were very happy with her progress. She was able to breastfeed at 11am and only had a small vomit afterwards. With no temperatures overnight and an improved heart rate and blood pressure she was discharged from ICU and allowed to go back to J1.

* Neutrophils = 0.0 (normal range is 0.8 - 8.)

* Platelets = 89 (normal range is 150-400)

* Haemoglobin = 109 (normal range is 95-104)

Wednesday 2nd February 2022

Day 14 IntreALL Protocol

Today Poppy is 8 months old. It was great to be back in J1 and whilst Poppy was still vomiting it has reduced significantly. Her heart rate was elevated at times, possibly due to her nausea. She received an albumin infusion too as albumin was low. Tomorrow the doctors have organised a CT scan to check Poppy’s stomach. If Poppy’s scan is all clear we may get the okay for Poppy to continue with the protocol and receive more chemo and a lumbar puncture on Friday.

We want to thank all of you who are out there continuing to pray for Poppy. Your prayers are working! The baby we have in front of our eyes today is completely different to the Poppy we had in front of us on Sunday. We have encountered so many unbelievably caring, intuitive, quick-thinking medical staff in the past week and we are just awestruck at how hard they work and how much energy they put into caring for Poppy. We are grateful beyond measure; John Hunter Children’s Hospital deserves infinite recognition for the fantastic work they do. Thank you thank you thank you!
Update 6.2.2022

 

Well Besties, we’re ending this week in ICU. The phenomenal team are crossing things off a long list of reasons why Poppy might be unwell and are still trying to figure why she stopped breathing and went blue on Thursday night. All we can say is, thank goodness for the quick thinking team who resuscitated her with high flow oxygen.  

The positives are: 

 After Friday’s lumbar puncture we know that her cerebrospinal fluid is leukemia and meningitis free! 

 The CT scan proved that she doesn’t have a bleed on the brain.  

 The fluid has almost cleared from her lung and heart chambers.

 She is vomiting less and her Tachycardia has reduced. 

 Poppy definitely seems to be improving so hopefully it won’t be long until we can continue her final week of chemo for this protocol.  

Thank you to all of the beautiful ones who continue to love and support us and check in regularly. We love you so much!  

Blood donors you are our heroes!  

 
Update 27.2.2022

 

Our sweet Poppy has been through the gauntlet over the past month. We are in awe of her strength and stoic resilience. Feeling extremely blessed to live here in Australia, especially seeing what is happening overseas.  

The relapse chemo protocol (INTreALL) that Poppy began 5 weeks ago has really taken a toll on her little body causing multiple stays in ICU, but we are back in J1 now. The main concerns have been fluid and extra pressure around her brain, fluid around her lungs and heart, persistent vomiting (multiple times a day for 5 weeks) abdomen pain, leg pain, low blood sugar, pancytopenia (low blood counts), high blood pressure and tachycardia (high heart rate).

Poppy has undergone countless tests and the following procedures in the past month:

* Abdomen X-ray x 3

* Abdomen Ultrasound x 2

* Bladder Ultrasound x 2

* Chest X-ray x 5

* CT Scan x 2 - brain and abdomen

* Endoscopy - camera into her stomach

* MRI - full body

* GFR - nuclear kidney test 

* Lumbar Puncture with intrathecal chemo x 2

* NJ tube inserted - this is a tube that sits further down past her stomach so she can get feeds without vomiting them all up. 

* Heel pricks to check her blood sugar 6 times a day.

We are now experiencing the agonising wait until Thursday or Friday to find out if the Leukemia has relapsed in her bone marrow. We know that her cerebrospinal fluid is clear but the intense chemotherapy has caused toxicity and her brain volume to shrink. We are praying that the Leukemia is gone and that we can go to bone marrow transplant as soon as Poppy is well enough.  

Blood donors you are living legends!  Thank you for keeping those donations coming there have now been 1032 lives saved under Poppy Grace’s Lifeblood group!!! Wow, we are blown away! Poppy has had platelets six times, packed red blood cells four times, albumin four times and IVIG twice in the past month. Your contributions are so important, thank you, thank you, thank you!

 

 
Update 22.3.2022

 

Well wonderful friends, we have had a fantastic first week in Westmead Children’s Hospital. We do miss our phenomenal doctor and our J1 and ICU family at John Hunter though. How can we ever thank you all enough?  

Poppy has spiked a few fevers this week, but luckily all the blood cultures have come back clear. She had a chest X-ray on Tuesday to check there were no fungal infections. She also saw the ophthalmologist on Wednesday and luckily her eyes are looking normal.

Poppy has raised intracranial pressure in her head. The opening pressure was 32 during the lumbar puncture she received on Friday and it should be below 20. She also has increased fluid in the subdural space around the brain. The team are running a variety of tests to try to understand why. The neurologist believes the most likely cause is the Methotrexate chemotherapy that Poppy has been having during her treatment. Luckily the increase in fluid has not impacted her vision, but it may be the cause of the absence seizures that she has been having. These cause her to stare into space vacantly and she is unresponsive and out of it for a few minutes after. 

Poppy had a CT scan on her chest and head on Thursday which both came back normal. She also had an ultrasound of her neck on Friday to check for blood clots. There was some narrowing of the veins around the central line but other than that it looked clear. She had a one hour EEG (electroencephalogram test) that detects electrical activity in the brain using small electrodes attached to the scalp. Poppy did not experience any absence seizures in that one hour so the results didn’t provide any extra information. If the seizures continue Poppy will need to undergo a longer EEG to find out more.

The dietician has come to visit to discuss trialing a variety of foods to encourage Poppy to eat, as she has been nil by mouth for 8 weeks. We’ve also met the OT and physiotherapists who will work with Poppy to keep her development on track. 

Unfortunately Poppy is still vomiting, which may be due to the increased pressure around her brain, or it may still be the mucositis caused by the chemotherapy she has had. The team will perform a bone marrow aspirate to sample her bone marrow and check the level of her leukemia. This will provide a greater indication of when she may be ready for the bone marrow transplant.

The great news is, Poppy’s bloods are fantastic. Her platelets are at 814, 

neutrophils 3.3 and haemoglobin is 97. The team may even let us stay together as a family at Ronald McDonald House for a few nights before the transplant!

Poppy received IVIG a blood product this week, used to treat many immune deficiency disorders.  1116 lives have now been saved by you legends who are continuing to donate blood in Poppy Grace’s Lifeblood group! We hope you realise how amazing you are for donating your blood and time to save another person.  

We thank you all for your interest, love, donations and support of our beautiful baby girl. We are praying deeply that Poppy will be cured of Leukemia and she will go on to live a long, happy, healthy life. If you have the time, we’d love your prayers for Poppy’s health too. We love you all dearly, thank you, thank you, thank you!  


Update 31.3.2022

Sending you all infinite thanks and gratitude for the kind words, positive thoughts and prayers. Seriously! Infinite thanks and appreciation for every single one of you! It means so much to us to know we have people like you all out there behind us.

Poppy’s bone marrow sample taken on Tuesday 22nd March came back with 0 leukaemia cells per 10,000 of Poppy’s cells. This is the first time she has reached this low level of leukaemia since starting her treatment. We are so shocked and so unbelievably grateful for the marvels of modern medicine and of course some delicious divine intervention. 

Poppy is going into bone marrow transplant with the lowest level of leukaemia she’s had yet and a 10/10 unrelated bone marrow match. This is an excellent position to be in. The match was found in the bone marrow donation registry and we know that the donor is 20 years old and male. Over the Christmas/ New Year period he injected himself for 10 days straight to prepare for the stem cell donation, which is very similar to donating plasma. What a selfless, godly, heroic legend of a human!

Poppy’s leukaemia type is so aggressive that we have a very small window to act before it returns. Considering this the bone marrow transplant team decided to start the countdown process immediately even though Poppy’s kidneys aren’t working well and she is still suffering with vomiting attributed to the mucositis from the toxicity of the chemotherapy. But first they gave us one night together as a family staying at Ronald McDonald House. Thursday night 24th March was one of the best nights of our lives. Poppy was free from all her IV lines and got to play on her mat like a ‘regular’ baby. We will draw strength from this joyful night when the going inevitably gets tough in the next few weeks.

In countdown preparation Poppy has seen the neurologist who is quite happy with her progress but has kept her on medication for the raised intracranial pressure and has began some anti seizure medication as a precaution whilst undergoing the harsh conditioning chemotherapy. She has had a GFR blood test to measure how much blood her kidneys filter each minute, which is known as the glomerular filtration rate. She is also on a medication to protect her liver from clotting. She’s had numerous blood tests and we have met with physio, occupational therapy and an audiologist to check the impact that the past chemotherapy has had on her hearing. She’s also had music therapy and has met with the speech pathologist this week.

Thiotepa was the first conditioning chemotherapy and it began on Saturday 26th March (Day -9). The countdown begins in minus numbers and day 0 is bone marrow transplant day. Thiotepa sweats out through the skin and can cause chemical burns particularly in the skin folds so Poppy has had to have 4 baths a day since Saturday. 

Poppy began the second conditioning chemo on Monday 28th March, Busulphan. She had it at 3pm, which was later in the day because we had a scare with Poppy’s central line being blocked. It had a clot in it and a special blood thinning medication had to be used to clear it. Thank goodness it worked because undergoing another central line surgery would have been difficult. She then had her blood taken at 5pm, 6pm, 7pm, 9pm and 1am to check her Busulphan levels. They were low so the dose will increase 15%. Poppy received packed red blood cells as her haemoglobin dropped- again, thank you blood donors! The stores of blood are super low again, so please donate if you can.  

We can’t even begin to thank you all enough. The donations, the prayers, the sheer belief in us is getting us through. The medical professionals who have touched Poppy’s life will hold a place deep in our hearts forevermore. The knowledge and wisdom they collectively hold is mind blowing and it is a privilege to watch them work. Please understand how much your time and investment in Poppy’s journey means to us. We love you all dearly.


Update Poppy Grace Transplant Day 4.4.2022

Poppy Grace received her bone marrow transplant today! We are so giddy with excitement and overcome with joy so details, thanks and huge appreciation will follow soon. She made it! Our precious warrior made it!

There is still a long way to go, this is the beginning of a new challenge in itself. Poppy will become very sick from all of the chemotherapy she had in the lead up to transplant. This usually happens 7 days after transplant and can last for 4 weeks. Then we hope and pray the new cells work in her body and her body doesn’t reject them, this can cause graft vs host disease which can be life threatening.

We are bracing ourselves for some hart times to come. Thank you for all your love, support and prayers so far. We can’t thank you enough. Please keep Poppy is your prayers for these coming weeks.