Home for Easter
Surgery Day (lung)
Lowri's Journal Page 2
The updates are listed here from most recent first. You can click on a date to the left and jump straight to this entry.
I had my sleep over with Lowri on Thursday night and can tell you was not as used to the hospital bangs and crashes as Harri and Lowri. Lowri had me up five times to go to the toilet (between 11pm and 6am) - she is on IV fluids 110 ml / hr so about 90 minutes is about as long as she goes between potty visits - and every time is just so desperate. Harri and Lowri seemed to be able to do the routine in their sleep, I have the bags under the eyes to prove I can't! Friday was her last day of Chemo this cycle and we got to go home on Saturday, Lowri will need to come back for blood tests during the week but shouldn't start Chemo again until 15th April.
On Saturday things seemed to go slow, most of the staff and patients had checked out of the hospital. Lowri was down to a slow 10 mls / hr through the drip just to keep it open. Blood tests confirmed she was really low in the White Blood Cell department and her Red counts were down as well. Blood Transfusion time.
Fact: Did you know 275mls of whole blood (one unit) takes 3 and1/2 hours to transfuse into a 3 year old.
You can't transfuse White Blood cells, their production can only be stimulated. Harri got a crash course on administering GCSF. http://www.neupogen.com/patients/overview/neupogen.html (white cell stimulant). Until Lowri's WBC picks up she will be at risk from infections. At the hospital we picked up prescriptions for preventative antibiotics and mouthwash and we hit the road. Lowri was especially pleased to get out, Harri and I both think the person who gave the blood she received must have just drunk a double expresso - it certainly 'picked her up'.
We awoke early early on Sunday morning to Chocolate eggs and very excited children. The kids were pretty well behaved and showed some restraint. I however ate my chocolate egg before I even got up.
We had a lazy day inside, although the Roosje and Liam disappeared to the neighbours all day, having lunch out and returning in time for tea. It was raining out but then apparently that is when the swimming pool is warmest. We had an Easter Egg hunt in the lounge - but as they had been 'hidden' all day and Lowri had done a bit of exploring before the others came home she pretty well beat them to most of the hiding places.
Tim spent most of his day in front of the PC and was building a modest Web site for Lowri and where we can collect the photos, journals and experiences as well as being a resource to share.
The day is winding up now, Lowri has finally run out of steam and headed off to bed (7pm). Liam and Roosje are watching Willy Wonka and The Chocolate Factory on TV before heading off to bed.
I don't know whether it was the 'new blood', excitement at being home or the chocolate diet but Lowri had and excellent day today, we played games she taught me marbles and joked about her molting hair all over the place.
She's doing just fine.
visit a local
It seems like a lifetime since last Tuesday morning when Lowri had her latest operation and an eternity since this whole nightmare began. But it is only a week and we have a long way to go before Lowri is blasting around the backyard again on her trike.
We discussed when the clear plastic plaster would come off her operation wound today but thought it might be less traumatic to save that one until tomorrow. In all this the thing Lowri hates and protests at the most is Sticking Plasters. And before you say it that 'Remove' stuff they use to get them off brings her a> out in a rash and b> is next to useless on the clear film covers they tend to use these days.
I am starting to come down and see the shape of the next 18 months or so. Starship (Children's Hospital) will become our second home it is unlikely Lowri will be returning home during treatment weeks and these start every 21 days. Tough times but others manage and we have plenty of offers of support.
After yesterdays chemical assault Lowri's (White Blood Cell count) WBC and Neutrophils (measure of resistance) have plummeted to half the lowest they every got to on the previous drugs. She now is classed as neutropenic and is susceptible to every germ and infection going .. roll on winter colds .. what joy. Lowri getting a bout of something other kids would just brush off is what scares H and self the most at present.
L. had a brain scan today - just routine (as routine as a brain scan can be) she was really good and laid very still the whole time and didn't need to be sedated or put under. Lots of kids get quite scared and as you can't remain in the room with them it can be that much more stressful - isn't she a GREAT kid.
Lowri and I planned a stay-over for Dad and I am planning to sleep in the hospital with her tomorrow night - this will give Mum a chance to get home and spend a little time with Roosje and Liam - who are being so well behaved and grownup through all this. It is a lot to ask little kids to have to deal with; the upset routines, part-time parents, curtailed social activities etc. Pat and Dave are a strength at home which is one less logistical worry.
One thing I am really grateful for - we don't live in America - I am sorry if you do, but some of the horror stories around accessing treatment, costs of medications and the lengths people have to go to in order they get what we take for granted. Don't let anyone take our Public Health Service away. We may bitch and moan at times but I Thank God for our Health Service, Starship and that we live in Auckland ...everyday.
If you are going away for Easter have a good break and drive carefully.
Bless you and stay safe.
Well things worked out better than anticipated for us and Lowri got to come home for the weekend after all. I had been planning to take Roosje and Liam up to visit L+H on Saturday when I got a call to come to the hospital as quick as I could - the Doctors were having a meeting and wanted to meet with us in 30 mins.
After rushing in the Doctors turned up promptly 2.5 hours later !! they however did review her blood counts and after determining she did not need any further medication for the weekend told us we could go home and return on Monday morning if we liked ! We were out of there in a flash.
We had a bit of a disturbed Saturday night, Lowri was restless - partly because of twinges from the operation, (only last Tuesday - kids are so resilient) and because she had got used to the noise and bustle of the hospital - too quiet and dark at home! Not to mention being a little scared of everything that is happening to her.
Back to Ward 27b (Oncology) on Monday and we met with the team and discussed the treatment plan with them, they too were amazed at how well Lowri has recovered from her Op.
Lowri is now on IV fluids full-time to keep her bladder flushing out the toxins and has received the first two drugs (Cyclophosphamide and Etoposide)
She gets these drugs for five days and then takes a break and resumes on another twenty-one day cycle. She alternates Cyclo.. with another drug called Carboplatin.
Somewhere either after this round or the next
[I'll leave you to read about these drugs] the one predictable and common side effect is reduction in resistance to infection - even more so than before.
So unfortunately Lowri won't be accepting any visitors at the hospital. This is as much for Lowri's as the other sick kids on the ward's safety and I know you will understand and appreciate.
Having said that Lowri is in fine fettle and aside from starting to look like the Michelin Man due to the extra fluids has so far not had any immediate adverse reactions to the new drugs, we hope and pray this continues.
I have attached a couple of recent Lowri snaps, the one with the ever-present thumb in the mouth is 2 days after the latest Op.
Thanks for the continued prayers and thoughts
Lowri had a busy couple of days. Tonight though she is tube free!!! her catheter, IV line, Epidural and chest drain have all been removed over the last couple of days and tonight she can once again roll over in bed without either ending up a tangled mess, or setting off all sorts of alarms and beepers.
Having the drain removed was a real demonstration of the good work the surgeons did in preserving Lowri's lung capacity - it wasn't a quiet affair, - just Lowri letting us all know how fed up with 'sticking plasters' she really is.
In the afternoon Lowri got some quiet time - she rode the moving bed on the nuclear scanner when she had her full body bone scan. She fell asleep, well it was a bit long winded but the technician though she was the best patient he had had. The preliminary result was clear - so that's one less thing to be fermenting away in the 'what next basket'.
Harri and Lowri will be staying in over the weekend on the Surgical Ward and on Monday will be moving upstairs to the Oncology ward - the Surgical consultant said to treat it a bit like a Hotel over the weekend - I don't think I'll seek his recommendations for holiday locations. At least with the tubes out they will be able to move around and fingers crossed may get out to the Domain. Roosje and Liam will be making their first visit this weekend and are real excited about seeing Mum and Lowri again.
Thanks as always for the kind thoughts and prayers
Lowri was quite tired - as you would expect today, but otherwise fine. The surgeon doesn't want her to start her Chemo until about nine days after the Op so (fingers crossed) she and Harri might get to have a couple of days back home recuperating before they have to return for another stay.
L will be having a full body bone scan on Friday, she has to have a 'tracer' to drink four hours beforehand, but the oncologist doesn't think she will glow in the dark.
Tim spent the afternoon at work to see if he was being missed and confirmed he _is_ dispensable. Liam and Roosje don't think having a sister with Cancer is so bad - they have been invited to the SOCKS (Siblings of Cancer Kids) outing - Rainbows end during the School Hols and a camp at Long Bay (North Shore Beach) in July (be a bit chilly by then tho).
Thanks for your kind thoughts wishes and prayers.
Lowri did have her operation this morning (19/2 am) and the surgeon removed three lumps from her left lung - we know she has at least one on her right lung but the current plan is to leave this for radiation and chemo which are to come.
The operation went without a hitch and the surgeon was happy with the outcome.
Lowri wasn't so happy and pretty grumpy and sore, but once she got back to the ward and settled into her room and the epidural started to work she seemed much more comfortable. Nodding off for most of the rest of the day.
She managed a vegemite sandwich in the afternoon, alas this was destined for a return trip and hour or so later. A quick addition of anti-nausea drug and she was feeling up to a McNuggets happy meal - having been left off the dinner list for the ward.
We expect if things go to plan she will be recovered enough in a week to move onto the Oncology Ward where she will stay for a further 5 days or so for the first of her Chemo treatments - for this Chemo regime she needs to stay in Hospital, as she will be on intravenous fluids etc whilst on the treatments - we expect to understand more about how all this works later.
Thanks again for the kind thoughts.
Love Harri, Tim, Roosje, Liam and Lowri.
This is just a general circular to update everybody on Lowri's condition.
Lowri had a chest X-ray, a chest CT scan and an abdominal ultrasound on Wednesday 13th March. The abdominal ultrasound showed that her remaining kidney, the site of the right kidney, and all other abdominal organs are currently clear of tumour. Unfortunately on Friday we were told that the chest X-ray and CT scan show that the small metastases (secondary tumours) on her lungs had grown considerably since the last set of scans, and so the chemotherapy used so far is considered to have failed to stop the cancer. This is now to be treated as recurrent Wilm's tumour.
On Monday(18th) we will return to Starship hospital with Lowri to meet with the surgeon who removed her kidney to discuss an operation (scheduled for Tuesday) to remove the largest of the tumours from one of her lungs. Following this operation she will stay in hospital, and when she is recovered enough she will begin her next chemotherapy, which is a lot more aggressive and dangerous than the first. For each treatment of this chemotherapy she (along with Harri) will be admitted to hospital. For five days she will be given the chemotherapy drugs, and other drugs to help survive the side effects of the chemo drugs, and probably some blood transfusions.
She will be released from hospital when she is considered fit enough, and the next chemo treatment begins 21 days from the start of the last one (ie. every 3rd week). There is a fifty percent chance that the cancer will respond to these drugs. After a couple of chemo treatments she will get 10 days worth of radiotherapy on her chest, with a pause in the chemo to allow her to "recover" from that. If the Wilm's tumour responds to the drugs over the first 20 weeks of treatment she will stay on a "Maintenance" schedule of 21 day cycles for 6 repeats of twelve weeks each.(72 weeks).
As I'm sure you will understand we are absolutely devastated by this latest news and are hoping to get some family time together this weekend before Lowri's return to hospital. This new protocol will affect the whole family hugely, and place a lot of stress on everybody. Because Lowri's blood counts are so low she will be unable to accept visitors other than family at the hospital after this operation and during the rounds of chemotherapy in the coming months.
We would much prefer people to communicate with us by email or letter than by phone.
Harri's parents are staying on in Auckland for another month to look after Roosje and Liam during the Easter holidays and after school.
Harri and Tim
When we arrived at the labs today we were the only people there, so Lowri was waved straight into the vampire’s den. She climbed onto the chair, held out her pointing finger, and waited patiently while the vampire set up ready to do the finger stick. Lowri reminded me that it was going to be a Harry Potter plaster, and luckily I had one in my bag. She was very good, sat still and hardly even flinched when the needle went in. Afterwards she made sure she got her lollipop and colouring picture as usual. She had a quick play in the waiting room, as she had missed out before hand, and then we went through to the main hospital to get me a coffee and then back up to the clinic. All of the above was completed with Lowri wearing a mask – the first time she hasn’t complained about it.
Up at the clinic she was weighed, measured (no more “sudden” growth) and her BP taken. We went in to see the doctor, who felt her tummy, looked in her mouth, checked her blood printout and declared her fit for service. The Doctor told me that she had been unable to find any details of why stage II with focal anaplasia is treated as stage III, but she was going to fax the U.S. for me for more information.
We returned to the waiting room where Lowri watched TV and I filled in her blood results in her blue book. I was amazed to find that her blood levels had jumped right back to what they were before she started chemotherapy, in fact so amazed that I looked this gift horse in the mouth and decided to question it.
Lowri was shown into the treatment room by her nurse, who was very efficient and managed to set up all the equipment quickly whilst talking to us both. I sat with Lowri on my lap while she had the full works. She was very good for the spray and wipe down and hardly flinched over having the needle put in, NO SCREAMING THIS WEEK – HOORAY. Suck out the heparin, in with the Zofran, saline flush, Vincristine, saline flush, and a running line with the Dactinomycin, another flush and then the hep-saline, needle out. I asked the nurse about the blood results and she said that she was not familiar with Lowri’s protocol and so didn’t know whether complete blood recovery in one week could happen. She asked the senior nurse, and she admitted that she was surprised but could neither confirm or deny that it could happen, and referred me on to our oncologist. We went back to the waiting room, to wait. I got out the blood results ready to show the doctor and whilst I was looking at them I noticed that it said that Lowri was 41 years old!! That definitely looked wrong. When the doctor came out of her room I asked her whether this recovery was likely to happen, she said it was possible, that results can go up and down, but when I pointed to the age she admitted that this was not right. The doctor printed out the real results from the computer, which showed that her HB and WBC had gone down again since last week, and the receptionist phoned the lab and confirmed that the fax had been someone else’s results. It pays to be vigilant.
Lowri was wiped out and looked tired for the rest of the day, but wouldn’t stay in bed for a sleep. She had a couple of bouts of diarrhoea in the afternoon, but seemed well otherwise. She went to sleep quickly at bed time, but woke up at 3am and tried to get into Roosje’s bed. I was woken by Lowri shouting “MUM”, and hit the ground running. She was sitting on the toilet and needed me to wipe her bottom. I sorted her out and put her back to bed and went back to bed myself. Half an hour later I was woken by a faint “Muuuuum” and rushed to her room where she told me she had a “sore tummy’. Another trip to the toilet (my cure for everything) and she was back into bed. At 4am another pathetic “Muuuum” and this time she was sitting up in bed with most of her dinner cupped in her hands. “I’m sick” she said. We cleaned her up and gave her half a Zofran tablet to chew up, which she did without complaint and went back to bed. Apart from sleeping later than usual the next day she seemed fine after that. Next time she complains of a sore tummy, I may pay more attention.
Lowri’s appointment at the hospital was not until 2.30pm today, so I decided to go walking with Susan after dropping Roosje and Liam at school. Lowri went in the buggy with the rain cover over her despite the glorious weather. When we got back home at 10.20am there were several messages from the hospital and Tim saying that they wanted us to go to the hospital before lunch, so after a hasty shower Lowri and I jumped into the car and hit the hospital track. The journey went smoothly, but the carpark was full when we arrived. We drove around for about 10 minutes and luckily got a spot near the lifts as someone was leaving. Unfortunately the lifts were not working, so a masked Lowri hopped onto my back and was piggy-backed into the hospital – the long way round as the back entrance was shut. We went into the lab. to get her blood test, and were asked to go straight in when we were ready, so I told Lowri to pick her finger and come into the room. She did not want to go in, and when she did finally enter the room she sat on her hands and started crying “I don’t know which finger to pick”. I tried everything from bribery, persuasion, logic to threats, but ended up having to prise a finger out for the vampire. It was not a good feeling. Lowri tells me that the finger prick hurts most of all the procedures, but not a lot!!! Lowri demanded her Lollipop and colouring picture and stomped out.
We went straight up to the clinic, and Lowri was weighed (16.60Kg). There were only two other families in the waiting room this week – or maybe that was because it was really lunchtime and there aren't any consultations during lunch. Our nurse from the ward was back off her holiday. She came to talk to us and asked us how it was all going, and how Lowri was coping, the nurse from last week was also there and spoke to us. It was the first time I had actually felt comfortable in the clinic. I told our nurse that I was unsure about the mouthwash and Mycostatin as each bottle only lasts about 12 days, but the doctor seems surprised when I ask for more. I was beginning to think I had imagined being told that Lowri had to use the mouthwash 3 times daily and the Mycostatin twice daily. She told me that that was the usual routine throughout treatment, but that Lowri’s protocol is very different from most of the ones at clinic so I should check with our lead Doctor.
The doctor came to tell us that she was ready for us, so we went into the consultation room. I lifted Lowri onto the bed and showed the doctor a rash that had developed over Lowri’s left abdomen, right shoulder, right cheek and right arm. She didn’t know what it was, but thought it was eczema and gave me a script for hydrocortisone lotion. I pointed out that Lowri’s blood pressure had not been taken this week and so Lowri was dispatched with the nurse for that and I asked the doctor about the mouthwash and Mycostatin. Her reply was “For the meantime” ???? She gave me the blood test results, and was relieved to find that her counts were only a tiny bit lower than last week. I forgot to ask the other questions I wanted answers to, I was going to sit down and write them down before the appointment, but as the time was moved forward I never got round to it. The doctor confirmed that Lowri was gong to have the full dose of VCR as usual, and we returned to the waiting room.
The nurse brought us into the treatment room and put on a pair of gloves. Lowri opted to sit up on the bed, and the nurse started the routine for accessing the port. She sprayed Lowri with the “cold” numbing spray (as Lowri is so anti-plasters we had abandoned the emla cream), and cleaned the site 3 times. When she approached Lowri with the needle Lowri screamed and pushed her hand away, so the nurse had to put on another pair of gloves.. The second attempt saw Lowri screaming and trying to turn away, causing the nurse to miss the port with the needle – apparently the first time this had ever happened to her!! The nurse suggested that I sat on the bed and Lowri sat on my lap. I did this and held Lowri’s hands out of the way, and tried to keep her still through the screaming and writhing which started when the nurse got out an new needle. Bingo, direct hit. Lowri sobbed as the Heparin was sucked out, the Saline, Vincristine, saline and heparin were pushed in and winced as the “wiggly” was removed again. Then she demanded her stickers. Over for another week.
Deal with the Devil day as far as I’m concerned. Lowri has to have her first dose of Doxorubicin, which can damage the muscles of the heart. We have been assured that the dose she will receive is not enough to damage her heart, but all the documentation talks about lifetime maximums of so-many-micrograms per sq-metre (surface area) whilst her dose is 1.5mg/Kg so we can’t even check their figures! Tim agreed to meet us at the hospital as I was very nervous about this visit. Unfortunately he had to go to Melbourne at lunchtime for work, but we hoped the treatment would be completed before that.
K kindly had Liam and Roosje for me again this morning. The taxi arrived at 10am to take Lowri and me to the hospital. We went straight to the laboratory at Starship for her finger prick tests. It’s first come, first served so we joined the queue and Lowri settled down to play with the toys there. When it was our turn she would not come into the room where the “vampire” was. “I have to write my name” she said and sat defiantly at the play table. Not very convincing as she can’t even recognise the first letter of her name as far as I’ve noticed. After a few stern words from me she finally followed me into the room, looking like she would bolt at any moment. The lady asked her to pick a finger, and Lowri chose her little finger. She was duly informed that the pinky was not a good finger to do blood tests on, so could she please pick another. Not happy about that. Didn’t want it in another finger. Finally gave up her ring finger for poking. I’m glad she caved on both points fairly easily as I don’t know what I’d have done otherwise. Let’s hope that stubbornness over these matters doesn’t get worse over the course of the treatments.
Up to the Oncology clinic to queue there. I felt like an old hand after last weeks floundering. We had a long wait today accompanied by quite a few children further down the track of treatment than Lowri. Lowri managed to trip up a boy with only one eye, and told him to watch out.
Lowri was weighed (16.35Kg), measured (remarkably she hadn’t grown taller since last week), had her blood pressure checked (116/68) and then waited some more. We saw her doctor in the consulting room. Same routine, back to the waiting room.
Finally into the treatment room and the Vincristine dose was pushed through the catheter into the port. I asked whether she was going to get any Zofran in case she was nauseous, but was told that the “Vinc” should not make her nauseous. I persisted with “What if she gets nauseous later”. The nurse assumed I had some Zofran at home. When I told him not, but told him about the tiny wafers given to her at the radiation suite he asked me what strength she was charted for. I did not know this. Sometimes I feel really stupid about these things, and then I’m sure that nobody told me. I knew nothing about any of these drugs four weeks ago, how can I be expected to tell the experts what strength of drug to give my child ? He went to check her chart. While he was gone we spotted a package of sandwiches on a shelf and when he came back in I said we were just about to eat his lunch (smiling). He got very concerned that we were hungry and started trying to arrange food for us. I assured him that I was joking, but he didn’t seem convinced. Back to the Zofran. He had never heard of the wafers, he gave me a tablet, half of which was one dose for Lowri, though I’d probably have to crush it up in some food. I realised later that I had failed to ask how often I could administer the “dose”, so it was lucky we didn’t need it that day.
This site was last updated 09/05/02