Radio 2 end
Lowri's Journal Page 3
The updates are listed here from most recent first. You can click on a date to the left and jump straight to this entry.
This morning we met with the surgeon who performed Lowri's previous two operations. After some discussion about the pros and cons of proceeding with surgical excision of the liver tumour, we decided to go ahead with this operation on Wednesday 10th July. The surgeons are planning to open Lowri's abdomen along the same line used for the nephrectomy, and will probably have to extend upwards or diagonally outward from the centre of her abdomen. They are hoping to find the single tumour visible on the CT, and that removing one quarter of her liver will give wide enough margins around that tumour. The operation will take 3-4 hours, and we think she will be in hospital for about 9 days afterwards.
We also met with a doctor from radiation with whom we discussed giving Lowri's liver some radiation 4-6 weeks after the operation.
Lowri insisted on making some gingerbread men to take in for the nurses at the Oncology Clinic today, which I'm sure she forced them to eat while we were in the meetings. She has become very focused on getting her own way this past week, I think it is her way of saying "Don't think I'm going to get up on that bed and breathe through that strawberry flavoured mask like the sucker I was the last two times". We shall see.
We have added the school photos to the photo album
Roosje's check-up at the hospital went well on Thursday, the growing plate is still lined up correctly, but they decided to leave her pink and green cast on as it is holding the plate in a good position. Back for another check in 3 weeks.
We all went to see "Scooby Doo" at the movies on Saturday night. A little scary in places for Lowri, but she enjoyed going.
We have meetings tomorrow with the surgeons who are to perform Lowri's liver operation - they couldn't both make the same meeting so we see one early morning and one in the afternoon. We are hoping that they can give us a date for the op.
....meanwhile Lowri's cousin Rochelle will be in Starship hospital on Wednesday to have her tonsils out - they'll be naming a wing of the hospital after our family soon !! Good luck Chelle, free ice-cream!
The wind and the rain arrived right on cue.........
Lowri went to Kindy last Tuesday and to "Mainly Music" on the Wednesday, and caught up with her friend Scott, so all in all the first half of the week was fun.
On Thursday morning Roosje, Lowri and I went to the local A&E clinic to see the orthopaedic specialist and have Roosje's ankle reset in a walking cast, but when the specialist saw her X-rays he decided that she needed a CT scan as he thought she may need an operation to wire up her growing plate. He arranged for us to see the Orthopaedic Registrar at ....... yes, good old Starship hospital (and I thought we weren't going to see that place again for a couple of weeks) who was to arrange a CT scan. We were directed via the A&E department waiting room, which had some rather "sick" looking kids in it, and so I didn't want Lowri hanging around there. When I pointed out the problem to the nursing staff they showed us into a consulting room, told Roosje she was nil-by-mouth until further notice, and put Emla cream on the backs of her hands in case she needed an operation. Some hours later we were sent for the CT scan, where Lowri got to "control" the computers (she's a whizz with a mouse) whilst Roosje was scanned. I think Lowri finally figured out why she lies on that bed in that room - she's seen the pictures that are taken and had them explained to her. It was finally decided that Roosje did not need an operation as it looked like the two halves of the growing plate are still lined up. She was given a new pink and green striped cast, but was told she cannot put weight on it, and we are to return for another look at the ankle on Thursday 4th July.
After Liam's soccer match on Saturday (which the Mustangs lost 3-1, the one goal scored by Liam), we went to Whakatane to visit Tim's Dad. We all had a good weekend, caught up briefly with two of Tim's brothers and sisters-in-law, and some friends (who looked after our 3 children for half of Sunday which gave us some time-out to take Tim's Dad out for lunch in peace), and watched the last two games of the soccer World Cup. The World Cup games were on from 11pm to 1.30am here, so we woke Liam and Roosje to watch the Final with us.
We came home Monday night with some very tired kids, but they have two weeks of school holidays to recover from that.
Just a quick update on Lowri.......
Lowri didn't fall asleep for the bone scan this time, but was very good and lay still listening to a cassette of "The Lion King". Unfortunately she had grown a little taller since the last one, and wouldn't fit onto three photographic frames, she was a bit restless on the fourth frame (the top of her head), but mostly kept still. After a stressful weekend waiting for the results we were finally told this afternoon that they couldn't find any lesions other than the one on her liver. This tumor will be removed sometime during the week of 8th July, not this Thursday as we had been told.
This is better for us because school holidays start here on Friday, and I have to take Roosje to get the cast changed on her broken ankle on Thursday anyway, so with Lowri's blood counts as close to "normal" as we can expect and with Roosje hobbling along on crutches we are going out to have some FUN next week - in the wind and rain that is forecast.......
Roosje broke her ankle!
She was playing
with Liam in the lounge and landed badly on it. After some convincing and failure of arnica to stop the swelling I took her to the after hours emergency centre. The X-Ray shows a small fracture through the growth plate in her ankle. She has a half cast from the knee down on the left leg, this will stay on for ten days and then a walking cast can be fitted after the swelling goes down.
Lowri had her scan yesterday after much waiting around the hospital, and half-a-litre of barium contrast to drink. Her Dr. phoned this morning to tell us the news that there were no other lesions visible, just the one on the liver. The surgeon will be looking at the scan, and hopefully will be removing that liver lesion on 27th June - Thursday week, coincidentally the same day Roosje has her cast replaced. Lowri is having a bone scan this Thursday, 20th June. She has to lie still for up to 15 minutes per "photo" (slow exposure), so we are hoping she falls asleep like last time.
Yesterday (Friday) we spoke to Lowri's Oncologist and to the surgeon who did Lowri's previous operations earlier this year. We have agreed to a restaging of Lowri's cancer. Next week she will have a head, chest and abdominal CT with contrast injected, and a bone scan. This is to establish if there is disease anywhere other than her liver. It will also give the surgeon a better idea of whether it is possible to remove the lump on her liver. Lowri's case is still being considered by the Stem Cell transplant team. In order for her to qualify for a bone marrow transplant anyway she will need to be free from macroscopic disease (ie no visible tumours, liver lump removed).
On a more positive note, Lowri had another platelet transfusion yesterday (platelets back at 14), but the rest of her blood count was OK. Because she will not be getting any chemo for a while, she may be able to do a few "normal" things this week. We went to see Liam play soccer today, not a first, but it has been rare enough for Lowri and I this season. The Mustangs won 2-0, both goals scored by the player of the day, Liam !!!! (not bad for a defender). Proud, proud Mum. I tried out Tim's new toy - digital camera and got a couple of not-toooooo-blurry shots for the photo album.
We have not had a very good week this week so far. Lowri made an unscheduled visit to Starship Hospital on Monday night, and today (Wednesday) the results of her CT scan were not as positive as we had hoped for.
On Monday Roosje, Liam and Tim went to see Spiderman, this was a private showing his work was putting on for staff. They all enjoyed the film and Liam is setting himself up for a broken arm if he doesn't stop leaping off things pretending to be 'Spidey'. The same night Lowri started to bruise up and developed the tell-tale blood blisters in her mouth that indicate a bottoming out of platelets (blood clotting). Harri rang Starship and they recommended she come in. The blood tests showed, sure enough low platelets as well as really low Haemoglobin. Lowri and Harri stayed in hospital overnight and L had the necessary transfusions and stayed on for her scheduled clinic appointment on Tuesday before coming home with Harri, Tuesday lunchtime.
Today, Wednesday, Lowri had her CT scan and we got the initial feedback on what it showed. As you know our focus has been on Lowri's left lung where she had previous metastasis surgically removed and on her right lung where one mass remained being inaccessible for surgery. The positive news is it appears that the lungs are clear at this stage. The devastating news is that there now appears to be a 1.5cm mass on her liver. We don't know any more than this and will know later in the week where to go from here.
Our uneducated assumption is that the radiation to her Lungs has been effective but the Chemotherapy is not having the desired effect, this mass on the Liver was not present at the middle of March for the previous CT scan, it also seems to have not been noticed in previous ultrasounds.
Please pray for Lowri.
An editorial by Harri......
When Lowri was first diagnosed, and she and I were in hospital for the first part of her treatment, I spent the evenings writing a journal of what had happened that day, so that I could keep the order of events straight in my own mind. This was a private journal, and so I wrote in all kinds of thoughts and feelings not intended for public viewing. At home, Tim was busy contacting all our friends and relatives, and keeping them up to date with events. He started to put together a list of e-mail addresses and did a regular mail-out, and eventually decided to make this web-site. In order to fill in the early information I allowed him to borrow relevant parts of my journal entries. At that time I was not ready to revisit what had happened and so I did not read what he had used from the journal. Some pieces were "published" which I would not have used, so I have re-edited these early entries.
Reading back has highlighted a couple of things I feel I should say about Lowri's treatment.
Lowri loves the staff at the hospital, she sees the Starship as her second home, and despite the procedures that she has had to endure there she is always keen to go back. We are grateful to the nursing staff, the doctors, the radiation teams, the receptionists, the "vampires", and the play therapists who all have made this time more bearable for us, and particularly for Lowri. If I have given an overall negative impression I am sorry. We have felt blessed to be close to this hospital at this time. Thank you to you all.
When Lowri was getting her second unit of platelets I read the information on the bag of platelets and, if I understood it right, these platelets were pumping around somebody else's body two days earlier. This brought home to me how important it is that people donate their blood. Thank you blood donors.
Lowri had a more restful week this week. We went to the hospital on Tuesday for blood tests, everything was on the low side, but nothing desperate. She started back on the G-CSF. Wednesday was school photo day, so we rolled up at the school at 8.30am and our children jumped the queue of kids waiting for photos so that Lowri would not have to stand around getting exposed to germs. Thank you to those in the queue who let us go first. Hopefully we will get some good photos to post on the site!! On from there to the hospital for follow-up check at the radiation department, no post radiation problems. We also went to visit the girls on MV4 who did the treatment. Lynette came to do a "home kindy" session with Lowri on Thursday, and Christine came to do "Mainly Music" with Lowri on Friday. Lowri loves these sessions, and I love the "time out".
This coming Wednesday (12th) Lowri has her next CT scan. We are very worried about this as it will tell us whether the cancer is responding to the current treatment. We don't know what options are left for Lowri if this chemo doesn't work.
Roosje developed toothache in Whakatane, which saw us making a visit to Harri's dentist on Monday. "Abscess - that tooth must go!" - she did get a day off school out of it, but can you believe she wanted to go in. Honestly, kids these days!! R is now looking to cash in big with the tooth fairy - I did tell her I don't think the tooth fairy comes when the tooth doesn't fall out by itself.
The Harry Potter video went on sale on Tuesday 28th. Liam and Roosje, having seen the film only four times at the movies bought a copy between themselves and we watched it last night, while we waited for Lowri and Harri to return from Hospital.
Lowri and Harri spent the day in Hospital, Lowri was back for Carboplatin and Etoposide. She also had an Ultrasound of her abdomen.
The ultrasound showed that things seem clear at the site of the left kidney that was removed. The remaining kidney looks clear and appears to have grown to take up the work of the other, and the rest of the abdomen looked clear, some good news. I don't want to get too excited as she has a chest CT scan on 12 June so we are keeping everything crossed for that and praying this Chemo is doing it's job.
Lowri just managed to 'qualify' for her therapy yesterday, her neutrophils needed to be above 1, The initial machine reading was 0.8 but she squeaked in with 1.02 on the manual count. The treatment yesterday went well, however, as Lowri may have been exposed to Chicken Pox at the hospital last week, she was isolated from the other Children, and worst of all the Playroom, all day - and the rest of the week.
I've just waved them off into the morning traffic - it takes about an hour to get into the hospital, but we are grateful that commuting in and out is an option for us.
After collecting the edge of a kitchen cupboard door on Sunday Lowri has been modeling a huge bruise on the side of her head this week. On Monday afternoon we went to the hospital for a blood test and found out why the big bruise, her platelet (cells for clotting blood) count, which should have been in the 150-400 range, were less than 10. In addition to this her haemoglobin, which should be in the 109-144 range was 77 and her Neutrophils were 0.46 (should be 1.4-7.0). She was given a Platelet transfusion, followed by a Red Cell transfusion and put back on G-CSF for 3 days. On Wednesday things were looking better at 35, 116 and 1.8, but Lowri had decided that she wanted to go and visit her "normal" Granddad (ie. the one who lives in NZ) in Whakatane at the weekend, before her next chemo, so we opted to check her bloods again on Friday prior to this trip.
Friday morning was "pet day" at school and Liam and Roosje were keen for us to participate, so Lowri was masked up for the trip and we took Copper out to meet all the children, other dogs, cats, birds, fish. mice, lizards etc. He was very well behaved and didn't eat any of the other exhibits, or scare many children. At the hospital we found out that the child Lowri had been talking to at the clinic on Monday had since developed Chickenpox, so Lowri will be on Acyclovir for all of next week, which should prevent her from getting chickenpox, and she will have to be isolated from the other clinic patients whilst getting her chemo. I decided that as Whakatane Hospital cannot get hold of platelets in a hurry if she were to have a bleed at the weekend, and her count had gone down to 27, she had another platelet transfusion at clinic just to be on the safe side.
We decided to stay for Liam's soccer match on Saturday Morning, they lost 6-1, but Liam got that one goal , so it's as well that he showed up. Headed off to Whakatane after the game. It was well worth the trip to see Lowri and Granddad vdW together again, Lowri didn't want to come home tonight, she wanted to "Stay here with Granddad forever". We got out to the beach for a long walk with Copper, and went visiting, but nobody was home !!
Lowri and Liam had a weekend at home together last weekend as Roosje was away on her Brownie Camp. Lots of fun and not much sleep apparently ! Roosje informed us proudly on Monday night she was the only Brownie to make it through the day at school without either falling asleep or going home early.
Lowri went in for her weekly checkup and blood tests on Wednesday. He WBC was pretty low although the G-CSF has maintained her Neutrophils and her Red Blood Count indicated she was just good enough to escape a transfusion. She has been pretty bleak looking the last couple of days and the anaemia has make her quite tired and lethargic. Understand this is a relative thing, half speed for Lowri is flat out for most of the rest of us. Harri confirmed with the doctor that they now consider her to have "stage IV diffuse anaplastic Wilms", she also picked up the X-ray report which noted that the (not visible) lesion on the right lung had not been visible on the previous X-rays either. Lowri goes back on Monday for another blood test to see whether she needs a transfusion before the next chemo. Hoping to get out and about a bit before that next round.
We all went to see Liam play soccer this morning (they lost to Forest Hill) but had a really good game as both sides were pretty well matched, just couldn't quite get the goals. Go Team Go !!
Liam has gone to the movies (Star Wars - Episode II) this afternoon, so no doubt we will have a few rounds of light sabre jousts later this afternoon on his return.
After weeks of keeping her room and clothes tidy Roosje finally got her wish and had her ears pierced today. Keep up the good work Roosje - belly-button next .... NOT!!!
Well that's another round of Chemo over with for a couple of weeks. Lowri had three trips to the hospital this week, all were day stays. On Tuesday and Wednesday she had Carboplatin and Etoposide which took 8 eight hours. Tuesday was a late and long day as Lowri had an X-Ray of her Chest first and then didn't start the Chemo until late morning, in the end Harri and Lowri didn't make it home until after 9pm. Today, Thursday, wasn't so long as Lowri only needed a couple of hours or so for the Etoposide alone to be infused.
These latest drugs have been making Lowri sicker (nauseous) than previous drugs, on Wednesday she left the car park feeling fine, but started feeling sick on the way to lifts and managed to decorate the lift floor on the way to the clinic. Our apologies to the hospital cleaners.
On the bright side the results of the X-Ray show "no obvious progression" of the lump on her right lung - in fact the specialists couldn't find it and didn't see anything else either. We were told that they couldn't find the previous X-rays to compare this one to however, but nothing sometimes is good news.
Roosje, Liam and Copper have made it onto the photo gallery, and Lowri has enjoyed hearing all the new entries to the Guestbook. Thank you all for your prayers, best wishes, positive energy and good karma. Anybody out there following Lowri's story , we would love to hear from you.
Lowri went for a finger prick test on Monday afternoon and all her blood levels were “okay”. We decided to make the most of a good week and do some “normal” stuff. With Lowri in the pushchair, rain cover at the ready in case we met any sneezers, we walked up to school to drop off Roosje and Liam. Tuesday saw Christine come around and do a session of “Mainly music” with Lowri, involving much singing and laughing. We also took Copper (9 m.o. Border Terrier) for a walk, with Lowri walking, and went to the big play park in the village. On Wednesday we went over to Lynette’s for morning tea. It was the first time Lowri and Scott (best buddies) had seen each other since before Christmas so they were pretty hyped and happy. On Thursday I decided to bite the bullet and take her up to school to meet Roosje and Liam and let her out to play with the other younger siblings. I made her wear her mask as I really don’t want her catching anything off the other kids there – it’s a little hard to screen out the runny noses in the playground.
Friday morning KM came round to sit with Lowri while I went for a much needed haircut. That afternoon was the school cross country race, and so Lowri and I decided to go and watch Roosje and Liam do their stuff. It was wickedly windy, and drizzly at times, so not so boisterous as previous events, but the kids got stuck in as usual. Liam finished 5th of the 6-years-old boys and Roosje was well up in her field but I forgot to count her position (too busy trying to take action shots of her running). Friday evening we had a family video event, after a quick soccer session at the park, we phoned for pizza and ate it in front of “Hook”.
Saturday morning soccer, Liam scored two goals again, and his wiggly front tooth fell out during the match. Go Liam!!
Tim and I started to tidy up the garage, and I finally got some weeding and planting done in the garden – I am so sore from weeding I am only capable of sitting at the PC now while Tim puts the girls to bed (I’d like to say that’s just an excuse, but it’s not). Liam has gone for a sleepover at a friend’s house – hope the tooth fairy finds him!!!
Back in for Chemo on Tuesday, Carboplatin (first time) and Etoposide.
Grandma and Granddad T went home on Thursday, they were a great help when we needed it. Assisting us with practical tasks while we concentrated on the immediate things we needed to do for Lowri.
Thursday morning Roosje and I attended the local ANZAC day service in Glenfield, we had a little rain but Roosje and the other Girl Scout Brownies were very well behaved. Roosje wrote a poem for Lowri at school and I have put this in the photo album.
I took Friday off work, last week and went into Hospital with Lowri and Harri. It was Lowri's last day of Radiation treatment. We had a bit of a false start after Lowri was sick in the back seat of my car - looks like I have to have the windows down all Winter!, but got there in the end. The staff in the MV4 radiation suite were very proud of their 'perfect patient' and presented her with her completed 'steps' chart and 'Lamikins' a Lamb doll - which actually baas when squeezed. We even had a couple of polaroids taken of her sitting on the machine after she finished, (quite over-exposed but I scanned one anyway). Lets hope we don't have to go back there again 'on business', Lowri however promised to return for visits.
Lowri returns to the Hospital on Monday for Clinic, but won't return for more Chemo until Monday week, the G-CSF doesn't seem to be having any significant side effects, it is often hard to tell whether your three year old is falling over because that is what three year olds do or because of one of other side effect of the drugs she is on.
Harri comments that she is uncharacteristically whiney this week and would like to blame that on the G-CSF.
The days seem to be whizzing by. Lowri is back home again and doing well. The last round of Chemo at 50% seems to have been a bit kinder to her, and she didn't need a blood transfusion before coming home on Sunday evening. She is back every day this week for the Radiation, but her last day of this will be Friday, given Thursday is ANZAC day (public holiday) - that makes eight days of Radiation.
I stayed over with Lowri on Saturday night after going to the movies with L+R. I can't really remember the film we saw, but we did get free popcorn, the kids laughed at the movie and we had some fun. In the afternoon Harri took L+R and Grandma and Granddad T to Waiwera thermal pools. On the way home they got to see the once in a hundred years planetary alignment of the Moon, Mercury, Venus, Mars, Saturn and Jupiter - pretty unspectacular by all accounts, but astronomically significant !!
Harri came back to the hospital on Sunday afternoon and I got a couple of hours in the garden, unfortunately the weeds seem to be winning the battle right now. We have resolved that we will get a Pool in this winter (if you read this next summer - you will be able to check how this resolution went!!).
When I returned to the hospital we were allowed to take Lowri home, as much as we wanted to get home we did question the decision as she was charted for post-treatment hydration overnight - a quick call to the on-duty Onc. and it was agreed as she was only 600mls(pint) down on the hydration that going home would be fine - just have her drink plenty at home (talking a pint, at the end of the day).
Lowri had the "butterfly" put in her right thigh for the G-CSF she will get every day this week and we were off home again. We will be observing her walking, as last time she had G-CSF she started to turn out her left foot (the leg that had the G-CSF) . We will be observing to see if she develops a temporary hobble in her right leg this time. If she doesn't we will probably put it down to a passing effect of the Vincristine (chemo drug.)
It's a big day tomorrow ... Liam's first game of soccer for the season go Mustangs go !! After soccer Roosje, Liam and self are going to the Children's film festival in the iMAX theatre, we don't know what's on but we have free tickets they handed out at the hospital .. so thought, why not?
I am going to spend the rest of Saturday and the night with Lowri in the hospital, Harri will get a break and take L&R out in the afternoon.
Lowri was a little sad today, her new friend went home so she didn't have anyone to chat with. Granddad and Grandma T visited but Lowri was too engrossed in the playroom to be sociable. Her treatments (Radio and Chemo) both went fine, although she spent 3 times as long waiting for a nurse to escort her back to the ward as the Radiation took - apparently rules are you need a nurse if you are dragging around an IV.
This hospital protocol didn't stop Lowri however racing up and down the ward corridor, with Mum or Dad pushing the IV pole and trying frantically to keep up; maintain slack in the IV line - but not too much - not following too close or she trips on the wheels - stopping quickly enough to not run Lowri over when she decides to pull up fast - fun, if slightly nerve wracking!
Lowri and Harri checked into 'Hotel Starship' this morning, they were welcomed back like good and welcome clients, "noisy room, just off the nurses station, no amenities - that's yours". We can't really complain everyone is very friendly and helpful - all the nurses love Lowri and she seems to have made a new friend, a fellow CK who is really chatty and cruises the corridors towing his IV along with him.
Lowri had Radiation and the staff love her there too, she was so well behaved that her treatment was done in 10 minutes, giving them 20 minutes longer for their coffee break. Our little girl is developing quite a fan club!!
The chemotherapy was reduced (50%) because of the combined impact of the radiation, she however was looking very tired and spent quite a while in her 'zoned-out' space (place she goes when she has had enough and just turns off everyone and everything around her) when I visited again in the afternoon.
One last treat of McDonalds (Fish 'n Fries) for dinner before the WBC start to descend again, and looking at the 'gristle and gravy' that was the alternative who can blame her for not wanting it!
Liam and Roosje visited Motat with Grandma and Granddad T on the weekend, this is where Harri and I got married, it's a special place to us, but a cool place to fiddle and play with the hands on exhibits for the kids. Yes, you drunks, they went on the Tram but no, champagne wasn't being served this time!!
Great "Get Well" e-card from Liam P and Ben - even spelt Lowri correctly ;-) a lot of people add an 'e'.
Everyone went to the Hospital today. Roosje and Liam went on an orientation day organised by the Hospital for siblings of cancer kids. They both had a great time and got to make dolls and play at doctors and nurses - even attached Portacaths and administered treatments. Liam showed me his vial of blood, "it's OK Dad it's just water with food colouring added". They got to have McDonalds and met some new friends. I think they know a bit more about what Cancer is but I have this feeling they think being in hospital is kind of fun. Is this a good thing?
Lowri went for her checkup prior to the Radiation treatment which is scheduled to start tomorrow (16th April). Harri was informed Lowri's next round of chemotherapy (same drugs as 25th March ) would start tomorrow as well - this we hadn't figured on and I guess we had presumed both the Chemo. and Radio. wouldn't happen together - lesson here don't assume. But, happen together they will, chemo. will be reduced to 50% and Lowri and Harri will check-in on Wednesday (granted one day delay to mentally prepare and pack!!). By our calendars this will have Lowri and Harri in hospital over the weekend and getting out on Monday (Sunday would be too optimistic).
The radiation treatment will continue to Thursday next week (8 days excluding the weekend) but as Thursday is ANZAC day (public holiday) Friday next week would be our guess for her last day of Radiation. We are not at all sure how badly the combination of therapies will knock Lowri's system, but we expect it to be a bumpy couple of weeks - next week will most likely be worst as she hits her nadir seven or so days after starting the Chemo. AND is continuing to get Radiotherapy.
Grandad vdW returned to Whakatane on the weekend, he enjoyed visiting us all in the city, but I think was glad to get home again. He has a new cellphone, so he is now in touch when off on his scooter jaunts.
Everyone had a great day at the beach today (Mairangi Bay). They went up the Skytower yesterday. We're taking advantage of Lowri's good health, the fine autumn weather and Grandma and Granddad being here to visit.
Lowri attended clinic this morning, her blood counts are down slightly from Sunday but as she is now off the G-CSF this is expected. We discussed with the oncologist the limp that Lowri has developed and her tendency to tip-toe around, this may be a side effect of the Vincristine drug she was on previously. One symptom Harri and I had failed to notice is Lowri has lost her reflex action (tap under the knee test). An appointment with the Physiotherapist has been arranged.
Lowri and Harri attended the Radiation simulation after the clinic. It all went pretty well although was long winded, the Radiation Department was full of people and the appointments had slipped by 45min to an hour. Harri and Lowri left their cell phone number and went back to the Oncology Ward playroom and waited to be called down.
When they got into the simulation after several 'rearrangements of position', forty minutes and one further tattoo later it was all over. Although I believe Lowri did complain about the hard bed (mould) she had to lie in.
Lowri starts her Chest radiation next Tuesday (think it must be eight days worth with the weekend off, as they don't work Sat/Sun).
The Radiology Consultant was on leave so Harri didn't get to discuss the forthcoming treatment with him, or how this will work into the current Chemo schedule, we think this means the next Chemo will be delayed until after the Radiation treatments have completed, (they don't usually do both together).
Roosje and Liam went to Kelly Tarlton's (Tartan's as Liam says) undersea world today with Grandma and Granddad T, they seem to have had a great time as they saw the sharks being hand-fed and the manta-rays smothering one of the divers!! (I presume he was feeding them).
Good news from the Hospital yesterday, Lowri's WBC has responded to the G-CSF and is well up. Her Lymphocytes are still down but if is fair to say we are a lot happier knowing that she appears to have passed her post drugs nadir.
We collected $347.15 in the donation boxes for Child Cancer Foundation week, thanks everyone at Tim's work! (pub box still needs checking)
Roosje is off on a sleepover and Liam has the luxury of getting his own bedroom back. Roosje moved in with Liam so Lowri could have a room to herself, although I don't know why we bothered. Lowri idolises her big sister so much she can usually be found snuggled up in bed with Roosje in the mornings anyway.
The School Holidays are halfway through here now, Lowri hasn't been too bothered by being kept at home as both Liam and Roosje have been here, we wait and see how long the 'Cabin Fever' takes to strike once School restarts.
Early start at the Hospital tomorrow for Harri and Lowri, clinic and then Radiation simulation.
Grandad vdW visited during the week and the children were really excited at seeing him again. Lowri and Grandad vdW have a special relationship, she loves chatting and he is quite deaf - she likes playing hide and seek and he is blind in one eye, they are a complimentary couple!
I have had an amazing response to selling the Child Cancer Foundation candles at work and would like to say a BIG THANK YOU to all the people who donated. I will be collecting in the boxes early next week so will post the final total. The box in the pub isn't doing so well, but I have to keep checking it!
I printed out the emails and comments from the Guest Book and like to say how much we appreciate everyone's kind thoughts.
We are taking Lowri in for Blood Tests later today so let's hope her WBC is up.
How low can you go ! It's the WBC limbo and Lowri is setting a new personal best (or worst as it happens) record. Her Neutrophil count is now down to 0.03. This on a normal range of 1.4 - 7.0. We were warned and had read that the chemotherapy impact peaks at 7-10 days after receiving - today is day 10 from her first dose last Monday.
To say I am worried seems so inadequate, the results of neutropenia can be devastating and certainly life threatening. Neutrophils are what we need to fight bacteria without them or after continued depressed levels our bodies have no first line of defence. Mouth ulcers, tonsillitis, gum infections, skin abscesses are the common outcome of low levels... someone just keeps kicking sand in my sandwiches.
Lowri has to return to hospital again on Sunday to check her levels and to check if the GCSF needs to continue - I can't see why it wouldn't, then again I have been surprised more than once at her resilience, and hope to be again.
We got confirmation that radiation simulation will happen after next Tuesdays clinic, however, Harri was told that she will start her next Chemo round on Tuesday week (not the Monday). This is convenient for the hospital, but of course means Lowri will be in Hospital Saturday and most likely all Sunday morning - possibly not getting out until the late afternoon. I have got a feeling this pattern will continue which doesn't do too much for our weekends now does it!
The local pub agreed to put a Child Cancer Foundation collection box on the bar - I got delivered a 'few' more than I needed so this 'outlet' may help. Of course I will need to make frequent trips to check on it over the next few days !!
April 2 is the start of the Child Cancer Foundation Appeal week in New Zealand. The Foundation have been good to our family and Lowri. Shortly after we arrived they mobilised and made our initial terrifying hospital encounters bearable.
Aside from the very practical support they offer families with Cancer Kids such as resources, books, people to talk to, a friendly face in a scary hospital and a safe retreat just off the Hospital campus. They are also very active in promoting and supporting research, specifically into paediatric cancers. Please support them this week.
Lowri is back to Starship tomorrow (Wed) for her Blood work (or to see the Vampires as she and Harri refer to it as), here's hoping her WBC is on the up (well can't go much further down !). We heard next week Lowri will be going in for her Radiation simulation (see January 11 for details of what this is). Hopefully she won't need a general anaesthetic but as it will take 30-40 minutes I doubt she will hold still that long.
We found a photographer at short notice today and had family group pictures taken, Lowri is shedding faster than a Persian cat in summer, and as Liam who got a #2 (crewcut) from Harri decided to practice on Lowri, we all agreed some photos now while she can still manage a comb over might be nice.
This site was last updated 02/17/03