Surgery Day (Kidney)
The updates are listed here from most recent first. You can click on a date to the left and jump straight to this entry.
Last day of Radio therapy. Left Roosje and Liam at home with Tim and hit the taxi at 7am. The traffic in was atrocious, I was glad this was to be the last early morning trip as some people are still on holiday and the schools aren’t back yet, so it must normally be far worse than this. The taxi driver dropped us at the main entrance so that I could get a decent coffee before we went for treatment. Lowri was still nil-per-mouth, but seemed quite used to it by now. I had even packed some muffins from home so that we didn’t have to do McDonalds again.
The treatment went according to plan, although Lowri was wiggling her legs slightly so the machine was stopped and she was warned to keep still. I think she was just bored by it all. She was very glad to be told she didn’t have to come back to this department tomorrow. She was given her Zofran wafer (antiemetic), and a packet of hair ties by the nurse, and then we left.
Tim was bringing Roosje and Liam in to the hospital on his way to work, but when I phoned to find out where he was, he told me they were still stuck in traffic north of the bridge. I told them to go home, and then Lowri and I called a taxi and met the others at home.
Once again Lowri showed little sign of any ill affects, just a bit tired.
In the afternoon the Oncology clinic phoned to find out whether Lowri had any visits coming up. When I told them about tomorrows appointment I was told it wasn’t in the computer. I was left wondering whether I had not booked Lowri’s appointments in the correct manner. Anybody’s guess.
Lowri, Liam, Roosje and I played putting on and taking off dressings and plasters. Even Lowri admitted that the technique that the Play Therapist showed me made for pain-free removal. Lets hope she relaxes when they take off the next one at clinic on Tuesday.
We decided to take the kids to Model World in the afternoon, a family trip out while we still could. It was a good trip out.
Roosje’s turn to come with us to hospital, but Liam had nowhere to go, so Tim was to drop Liam off at the hospital on his way to work, and then we could all come home together in a taxi.
Lowri kept still for the treatment again, and we went to breakfast at MacDonalds. Liam turned up just as we were eating breakfast, so he joined us in a McMuffin combo.
We then went up to the 7th floor to the Oncology clinic for them to deaccess Lowri’s port. After talking to the nurse there about Lowri’s hatred of plasters we decided to leave the port accessed until after her next chemo push next Tuesday – that will save her one accessing. Lowri was happy about that.
We all took a walk down the road to see the Child Cancer Foundation’s Family Place which is just outside the hospital grounds. There was a playroom for the kids and a lending library where I found a couple of books about cancer for the kids and a good book about childhood solid tumours for me to read. We caught the taxi home from there and ordered our taxis for next week.
Roosje went to AM's again. Lowri, Liam and I did the same routine as yesterday. Went smoothly again. Home by taxi. AM dropped Roosje off at lunchtime.
Tim dropped Roosje at AM's for the morning on his way to work. Liam, Lowri and I got a taxi at 7am straight to Radiation. Same routine as yesterday. All went smoothly.
Breakfast at McDonalds, home in a taxi.
At lunchtime we went over to AM’s to collect Roosje, as Roosje and Liam were both going to a friends party at 1.30. On our way home the car bunny hopped to a standstill and would not start again. I got out my cell phone to call Tim, only to find I had “insufficient funds” to make the call. Luckily the Automobile Association has an 0800 number. As I sat there with the bonnet up Susan drove by and called me on my cell phone to ask if I needed help, so she turned around and brought her phone back to me so that I could call Tim. The AA man beat Tim to the scene, told me it was alternator trouble, charged the battery, and followed me home. Tim persuaded Greenhithe Motors to let me jump the seasonal queue, as we were previous customers, and so I kissed goodbye to transport freedom for a while.
Taxi pickup at 7.30am for an 8.30am start –supposedly doing some play therapy in the room first. Somewhere along the line someone had their wires crossed, we are not needed until 9am when the anaesthetic team arrive, but we were meant to be playing it cool for Lowri, just going into the room and getting on with it. Roosje and Lowri sat and played with the Play Therapist in the toy corner, I did some jigsaw.
Into the room, showed Roosje where Lowri had to lie still, gave Anita (Lowri's Doll) a trip on the bed, up and over to the “machine”, put Lowri on the bed, wedge pillow under her knees, One Hundred and One Dalmatians story cassette in the machine, lined her tattoos up with the red lights, told her to lie still, and left the room. It worked. She lay still for both lots of 30 seconds. Hooray, no general anaesthetic.
Went straight to the Starship laboratories for a finger prick blood test to check blood levels, then on to McDonalds for breakfast.
Next we all went up to the Oncology clinic, where Lowri was weighed (15.95 Kg) and her height measured (0.98m). I was told that the Oncology Consultant was ready to see us, but nobody told us where to go, so I had to ask. We found the consultant in the consultation room (of course).
She asked if I had any questions, answered them briefly, then gave me two dates for our next clinic visits and said goodbye. I wasn’t sure what to do with the clinic dates, but the lady at reception gave me times to go with them. We went back to the waiting area until we were told they were ready for Lowri’s chemo treatment, but not told where to go again. I wandered down the hallway with Lowri until someone beckoned to us from the treatment room. I found the whole clinic experience awkward as everyone seemed to presume we knew how it all worked, and we didn’t.
Lowri was given her first dose of Vincristine. We left the treatment room, went back to the play area where the play therapist gave Lowri a bag of medical bits to practice port accesses on her dolls and practice putting plasters on other people and taking them off to try to get over her plaster hysteria. Then we left.
Taxi home, and got Liam home from Ks. At home Lowri and I accessed Penny the doll’s port. Lowri thought this was great fun, so did Liam. Now Penny has a wiggly like Lowri’s.
Up at 5.45am for a taxi ride into the hospital. Put Emla cream over the port site to deaden the skin, and covered the cream with a clear plastic plaster with foreboding. Taxi pickup at 6.15am, nil-per-mouth beforehand. We arrived at Starship early for our 7am appointment at the children’s Oncology clinic to have Lowri’s port accessed. It was about 7.20 when we finally found a way into the clinic and found a nurse to do the accessing. We were told that they tell people 7am in the hope that they’ll make it by 7.30. Lowri was not pleased about having the plaster taken off the Emla cream, the by now usual fuss ensued. The staff tried to distract her with a lamp with swimming fishes in it, not much luck there !! The patch of skin over the port was then cleaned three times and a new needle inserted with a “wiggly” (tubes) attached. The access was then covered with a large clear plastic dressing. Uh-oh.
Next we went to Muffin Break to get me a coffee. A bad move as Lowri was still nil-by-mouth and the muffins smelt delicious. A mutiny was quickly averted and we moved on to the radiation suite where all those new faces swooped in to welcome her. Unfortunately a power cut whilst we had been at the clinic had upset all the computers and nothing was working. All the machines had to be spun up again and checked before the treatment could take place. Thankfully there was a play area where one of the team kept Lowri amused unpacking all the toys out of the toy box while I had some time-out doing part of a 1000 piece jig-saw in the waiting room.
Finally the room was ready for us, and the whole circus moved in there. Some noisy stuffed farm animals were found, and the farmyard moved into the room too. Some of the animals went for a ride on the bed, and then it was Lowri’s turn. Everyone was so busy assuring Lowri that it wouldn’t hurt, and she mustn’t move, and Mummy could see her through the TV camera, and Mummy could talk to her through the intercom, that it even freaked me out. Eventually the anaesthetist took pity on Lowri and just put her under. The treatment was given, taking about 30 seconds above and the same from below, and she was wheeled into the recovery room to come round. While she recovered I met the play therapist from the children’s Oncology ward. She listened to my assessment of how things were going and suggested a few things for us to try tomorrow to persuade Lowri to keep still. We decided that only Lowri, I and the two necessary technicians went into the room, and we basically tell her to hop onto the bed and keep still whilst the therapy takes place. It was also suggested that, as she was recovering from major abdominal surgery, a pillow under her knees might stop her tummy being pulled as she lay on her back on the table. She wanted Roosje to come with her, so that she could show Roosje where she has to lie still.
Home again in a taxi. I could write a book on the various taxi’s and their drivers, but that would be another journal.
Tim had dropped Roosje and Liam at KMs where they spent all day playing with neighbours kids.
We took Lowri into the Oncology Department for her simulation ready for her radiation treatment next week. She was introduced to all the members of staff; she slid back into the back of her pushchair and sucked her thumb. Anita was with her, and everyone commented on what lovely hair Anita has – me thinks I might have to do something about Anita’s hair before Lowri’s falls out. Lowri was given a general anaesthetic and Tim carried her in to the simulation room and laid her on the table. The technicians made a mould for her to lie in for the treatments, and gave her four pin-prick tattoos to mark the edges of the area to be treated.
We went to the recovery room whilst she came to and had her port de-accessed (the needle and tubes taken out). It took a huge effort on the nurses part to take off the large clear plastic dressing covering the access amid all the screaming from Lowri. A Primapore dressing was put over the port site. She was happy to be going home. She was not happy to have met all those new faces.
I stopped off at a stationery shop to buy a new diary on the way home, I figured I would need one this year to keep track of all the appointments to come.
When we got home our house had been cleaned by Debbie, Judy and Susan. This was a huge help to us.
Tim went to Whakatane to collect the other children. Paul (Tim's Brother) had taken Roosje & Liam to Grandad’s house and Tim met them there, they all stayed the night, and returned home on Saturday. The family was back together again.
Morning ward rounds, Lowri has handled the first Dactinomycin well. She is drinking and eating a little. She still hasn’t moved her bowels naturally, but is generally well. She can probably go home this afternoon. Hooray. She visibly brightens at this news. She is prescribed regular doses of panadol and some lactalose to help her shift her bowels.
The pastors wife called in to visit and gave me some useful advice on handling people and the situation, and promised to lend me some books. She also offered Lowri & I the use of her heated swimming pool, and said the Ladies of Glenfield Baptist Church had offered to cook some meals for us to put into our freezer.
Lunchtime we met the radiology consultant. He explained how the radiology works, a crash course in cell biology. He told us that Lowri needs the radiotherapy within 14 days, but the radiologists are going on strike next Wednesday for 3 days. He has put in a “demand” that Lowri be treated as an emergency during the strike. It probably depends more on finding a paediatric anaethetist free to give her the general anaesthetic every day for six consecutive days (skipping weekends). He told us that they prepared and sliced the left kidney tumour, and in some two thousand odd slices they found only two of these focal anaplasias, and they were really tiny and hardly visible under a microscope. We discussed the risks of further cancers and other bad things caused by the radiotherapy, future fertility etc, and he mostly put our minds at rest. We signed the consent papers, we don’t know any better than they do. He quoted some “very low chances” to us, which were all a lot higher than the 1 in 10,000 chance that bought her the tumour in the first place. Who knows.
We also met a lady from the Child Cancer Foundation. She was very helpful, and told us about all the things they can help with, like sibling education, information library, family support, taxi rides to and from the hospital and putting other families with similar cancers in touch with us. She told us that new families usually receive an information pack on arrival to the hospital, but because it has been Christmas nobody has been here to give us one. She hopes to get us one for tomorrow.
We also saw the social worker who told us about all the things we could have claimed for if only we had kept the receipts, and helped us to claim for a few non-means-tested allowances. She also tells us that there is a staff canteen at the main hospital next door which we were welcome to have used during our stay. Tim was fairly upset that all this information was so late coming. He was also not impressed that had we been within the means test qualifying group we may have some help to clean the house and mow the lawns etc.
Lowri had some pain in the late afternoon, but finally…….Poo !!! Hurrah !!
I dwelt a little tonight on the changes that we are going to have to make as a family.
I spoke to Liam and Roosje on the phone. They are ready to come home, they are missing us and we are missing them. We have never been apart this long before. Tim thinks he will collect them on Friday. It will be nice to have some time as a family of five again, it’s been a long time.
Lowri had a peaceful nights sleep. Tim turned up with Roosje and Liam early and were present when one of the Oncology consultants did ward rounds. He took time to explain some things to us including the staging and the now revised protocol for treatment that Lowri would be on. Lowri has a Stage 2 tumour but because of the unfavourable histology (focal anaplasia) will follow the stage three treatment regime. This started today and Lowri had her first dose of Dactinomycin (yellow liquid). Lowri was asleep when the nurse, all dressed up like Barney in purple smock and gloves (splash proof kit I think), gave her Zofran (anti-emetic) and then the Dactinomycin through her Portacath. She added this to a running line so the drugs were washed in rather than going in ‘straight’, then the line was flushed with saline. Lowri never woke up the whole time – although she got fidgety when the Dact. was injected.
Noel came up for a visit and Lowri slept on. The Radiologist will visit us tomorrow to discuss the Radio therapy. Lowri will have six days straight of radiation to her abdomen, we have plenty of questions.
The Surgeon who operated on Lowri visited to see how she was feeling, he described a little more of what he knew and the staging of the tumor and what focal anaplasia was. (Q. should we save the use of radiation – note literature indicates chemo not nearly as effective against anaplastic cells is this what the Radiation is for?)
Lowri’s nurse, gave us further literature explaining the Portacath, discussed the routine of what life will be like coming into clinics, talked about the drugs and effects, oral hygiene for mouth ulcers. We have now got our Blue Book into which all this information goes, and which we record Lowri’s bloods and meds etc – more for our comfort and involvement I suspect.
Lowri had another fit of the screaming 'ab dabs' at lunchtime, and could only be calmed with a little Morphine and a video. Tim and Noel spent some time trying to get the video player working properly, and finally Lowri was able to go to her “other place” in video land. White knuckles on the bedspread, wild and blue-rimmed eyes, ignoring everybody else, and annoyed by any physical attention. She didn’t eat lunch.
In the afternoon Lynette and I decided it was time that Lowri got over some of her mental blocks. We hatched a plan to get her pumped full of Morphine and give her a bath. Unfortunately once we had sold the bath idea to her we could not find a nurse to do the drug part. Lowri insisted that she wanted a bath, so we got all the stuff together and ran a bath, finally got the nurse to give her a little Morphine, and stripped her off. At this point the social worker arrived, so she was duly made to feel unwelcome and we took Lowri to the bath. All this sounds easy, but not one single part of this was straightforward. For example there weren’t any plugs to be found anywhere so we used a babyfood jar lid in the plughole. Once in the bath, and before the Morphine could have taken effect, she sat up quite happily and played with the bath toys while we washed her hair and the rest of her. In the end we had to force her out because the water was cold. Back in the bedroom she told us that she couldn’t possibly sit up because “It hurts too much”. I suggested that we might take off the operation dressing, a large see-through plastic dressing, and she instantly went into mega-pain mode. Beads of sweat appeared on her face, which went a lovely puce, she shook and wailed. I never even touched her. We decided to leave it. The nurse walked in with a tray of tools for removing the dressing and Lynette emptied out her handbag to look for distractions. Whilst Lynette and I ran a circus act, the nurse removed the dressing with very little fuss. The wound was clean and dry apart from the very lowest corner, so a VERY SMALL dressing was put on that corner. After that an easy chair was moved into the room, and Lowri moved to it to watch another video. Lowri didn’t fancy the look of the hospital dinner, so Lynette was dispatched to McDonald’s for a Happy Meal.
Meanwhile Tim arrived back with Lowri’s new video, Barbie in the nutcracker, and a relatively happy Lowri sat to watch the video and chomp on a few chips.
She ate two chicken nuggets and half of the chips and then went back to bed.
Later on she said that she could hear other children, so I told her that she should get out of bed and go to see the other children. She asked me to carry her, but I put her down on her feet and told her to grab the edge of the bed. She was VERY unstable, but we managed to move her to the door, with the drip stand in tow. She hung onto the door frame for dear life and looked up and down the corridor. I then stood her on the legs of the stand and pushed her up the hallway to the nurses station. The nurses found her a lazy-boy chair and let her sit there rocking for a short while, then her nurse gave her a ride back to the room on the stand. Bedtime for today, but high hopes of mobility tomorrow.
My brain is suffering overload. I am having difficulty remembering who said what and when. Some of this may be inaccurate.
Ward rounds: surgical consultant, okay to eat soft foods.
Pain team: okay to turn off epidural, so turned off.
Surgeon: good, give her some food.
She tucked into one and a half Weetbix for breakfast and half a sausage and some mash for lunch.
3pm sending her up to the Oncology ward - 27B, which is currently housed at 25A as 27B is having new carpet and is out of action for a week.
Roosje, Liam and their cousins turned up to visit, brought some great mobiles they had made for Lowri, but unfortunately there was nowhere to hang them in the hospital.
Moved Lowri up to Oncology. On arrival at the new ward Tim noticed that Lowri’s IV drip bag had the name of the girl from the next bed in ward 24B –oops, right fluid, wrong name. The nurse quickly hooked up a new bag.
Oncologist told us that they had the results of the biopsies, and the news was not brilliant. They found something called “Focal Anaplasia” (refers to the type of cells found in the tumour and how rapidly they divide focal meaning localised or in spots as opposed to diffuse which is throughout the tumour), which meant that Lowri would be on 3 chemotherapy drugs instead of two, and that she would need some radiotherapy as well.
The radiation therapy will be explained by someone else, but she starts the chemo tomorrow. She doesn’t seem well enough after the operation to me.
The drugs are Vincristine, Dactinomycin (Actinomycin-D) and Doxorubicin, this is as per the National Wilms Tumor Study (NWTS). We had some stuff explained to us, but Lowri was upset, and so was I, so I took in very little of the information. I thought of plenty of questions later on though.
Lowri was very upset about being moved. Her flowers were not allowed on the new ward , and she was resisting weeing again. It obviously hurt to pee, and when she started to get upset she clenched her stomach muscles, and then the pain really set in. Beads of sweat formed on her upper lip and nose, her face went puce and she shook and cried. She was on Panadol every 6 hours and Morphine, orally, every 30 minutes as required. We were moved to a room of our own on the Oncology ward with two real beds in it (bliss for me!!!) and she made me move my bed close to hers before she would go to sleep.
She still has no idea of what is coming.
Woke up late at 7.50am so had missed the night nurse going home. I was told by our day nurse, that the night nurse had stopped Lowri’s epidural at 6am, but she seemed to be doing OK so we would see how it went. Morning rounds brought news that she could have the drain taken out from the wound site and the urine catheter removed, and she could carry on with ice-cream and ice-blocks for today.
I met AM and M at McDonalds, they told me that S had been pushed from their trampoline onto concrete and was in surgery having her arm set, both bones broken.
Lowri was given a dose of IV morphine before the nurse removed the drain, but it got stuck just under the skin and the registrar had to remove it. The catheter was removed by the nurse. Later she had sudden attack of pain, turned puce in the face and was screaming the house down. She was given another dose of morphine, which calmed her down, but the rest of us, including the nurse were pretty shaken. She had another attack and we asked to see the pain team anaethetist but she was in theatre, so Lowri had to wait. When the anaethetist arrived she said that she would not have switched off the epidural, and she switched it back on and gave Lowri an extra boost. She seemed to be more comfortable after that, she was however holding on to her urine, and refused to use either a bedpan or a nappy. This all came to a head in the afternoon when she started screaming in pain again. In the end we had to cave in and take her to the toilet. She was put into a wheelchair and taken down the corridor followed by all her medical equipment. It worked, She happily obliged with a loooong wee. Back in bed she dropped into an exhausted sleep. Just before the nurse went off duty we persuaded Lowri to use the bedpan, she seemed much happier with the idea after that.
The Surgical consultant who works with the surgeon who operated on Lowri arrived for Ward rounds this morning. He is very pleased with Lowri and told the nursing staff the Kidney drain tube and the Urinary catheter can come out tomorrow. Lowri is in no pain this morning and is moving around the bed rolling from her side onto her back etc without any problems.
We had a visit from Sue and Noel, and Harri and I were able to walk down K’Rd and buy Curries for lunch.
The pain therapist visited
Night nurse took off pleth (ET finger monitor for pulse and O2) and blood pressure cuff, announced that she was only going to do four hourly checks.
Nasal drain removed. Pain in evening , mucking around with Epidural pump
Today Tim arrived early and looked after Lowri while I had a shower, then we took Lowri down to theatre at 9am. Tim signed her consent to anaesthetic and consent to surgery forms and her doll Anita and I went into the theatre with her and talked to her while they injected the “white liquid” through her IV line. She lay there peacefully for a few seconds then her eyes rolled up and closed, then she suddenly pulled up her knees and hands into a foetal position and lunged off the bed away from me. Luckily many hands reached out to stop her falling off, but it gave me a bit of a start. I left the theatre crying and hugging Anita.
Tim and I went for a coffee and then a walk along Park Road, then into the Domain. We had an ice-cream and then walked around the wintergardens, which I had never seen before. We then went back to the hospital and bought Lowri a pink ballerina “guardian angel” bear, and went into the chapel for a while.
We went from there back to the bedroom and waited. We got a phone call from the surgeon at about 1.15pm and went down to the pre-op room. He told us that they had only found one lump on her right kidney, had cut it out and sent it for frozen section. He had been told it was definitely a cyst, and so as they had failed to find tumours on the right kidney he had continued on to take out the entire left kidney, tumour and all. He told us that there had not been any “macro” spillage of the tumour, and it was removed without compromising any of the surrounding organs or vessels. He had also taken some samples of lymph tissue. He could not tell what kind of tumour it was so we would have to wait 48 hours to know whether it is a Wilms or not. He shouldn’t have to open her again for now.
He then told us the registrar was going to have a cup of tea and then put in the line for the chemo therapy, which would take about 1 hour.
The news so far was relatively good, so we returned to the ward to wait. And wait, and wait. At 4pm they called us down to the recovery room. If you ignored all the tubes and the cut right across the abdomen she looked pretty good. She was talking to the theatre nurse and seemed pleased to see us, and Anita. She did not like the naso-gastric tube and wanted it out. She didn’t seem bothered by the urinary catheter, the drain in the wound (draining urine from the cut in the remaining kidney), the epidural tube in her back, the IV line in the back of her hand, or the line into her chest. A heartbeat monitor on her finger, an oxygen mask, and a blood pressure cuff on her ankle finished off the effect. We stayed with her in the recovery room until 5pm and then she was moved into the high dependency room on the ward, where she would be closely monitored for a couple of days.
What a relief to have her back.
Lynette came in to visit and spent a good few hours with us in the room. It was nice to hold some normal conversation for a change, intermingled of course with the trauma of the last two weeks.
The surgical registrar came in to visit, and told us that the hold up had been because they had tried to insert the line into a small vein in her neck, but had failed and so had to extend the cut and insert the line into a larger vein.
Now we concentrate on recovering from the surgery before moving on to Oncology for the first dose of chemotherapy.
Got up at 6am, coffee, toast shower, Tim, Lowri and I back to the hospital by 7.40am. Another breakfast was waiting for Lowri, so we all ate a little of that. The doctors didn’t make it to our room until 8.45am and the consultant surgeon was with them. He showed us some of the pictures from the CT scan and X-rays. He showed us the 3 spots on her right kidney, the massive tumour on her left kidney, which took up half her pelvic cavity, and the fuzzy edges on part of her lungs. He explained that they were going to open her up tomorrow (Thursday) and take biopsies of the 3 lesions on her right kidney, which the pathologist would do frozen sections on while they have her open. If the pathologist is 100% certain that the lesions are benign they will look at taking out as much of the left tumour as possible. Otherwise they will biopsy the left tumour too, close her up, insert a catheter for the chemotherapy, and put her on chemo for 6 weeks to shrink all the tumours before trying to remove the left one. They hope that the chemo will “dissolve” the lesions on the lungs. They are not even sure that the tumour is a Wilm’s tumour, but that would give the best chance of recovery.
Next we saw the Haematologist/Oncologist. He answered questions about the chemotherapy, how it is given, the drugs, their side effects, their long-term effects etc. He said she will probably be on 3 drugs, and he was assuming it is Wilm’s tumour. He also discussed the possibility of radiation therapy and it’s implications. I stopped taking some of it in.
In the afternoon we were visited by an anaethetist, not the one from her operation, to talk about the anaesthetic and pain relief after the operation. As the play specialist was away the anaethetist attempted to tell Lowri a little of what was going to happen to her. We just decided to cover the initial anaesthetic and waking up with tubes coming out of her. She took Lowri down to the theatre waiting room and gave her a strawberry scented mask to play with. We returned to the bedroom and pretended to put all her dolls and teddies under with the mask. I finally realised that Lowri still believed that she is in hospital because the dog bit her lip. I decided to break that belief in case it ever happens again, or she holds all this against the dog. She is obviously upset by what is going on because she keeps hitting and scratching me and refusing to do what she is asked, and screaming and shouting. I told her she is in hospital because of the lump on her tummy, which is why the doctors keep feeling her tummy, not her lip. She seemed to accept that ok, along with the news that I will wake her up at 1.30am to force feed her a “midnight feast” as she’s on nil-per-mouth from 2am. She is having a drip put in at midnight to get her fluid levels up pre-op.
She didn’t want to go to sleep tonight again. I persuaded her to have her feet washed in the shower, and gradually moved the water up to her navel, but she was very worried about her luer so we stopped there. She finally crashed out at 9.30pm and I just watched her sleep for a while.
Happy New Year !!
Today was just biding our time. We spent the morning in the playroom on the ward, but the play specialist was not working until Jan 3rd so there were few toys and the paint and playdoh were not out. At 12.00 Tim took Roosje and Liam away to his brothers house at Papamoa for a few days.
At ward rounds we saw the Registrar and housemen, who said they would ask if it was OK to take Lowri out to the Domain in the afternoon. The nurses told me later that they thought I was going out to the Domain, so we took that as a yes and walked down to meet friends. It was horribly humid outside and we were dressed for indoors. Lowri fed the ducks and then we went to the kiosk for enormous icecreams. After that we walked back to the hospital. The evening shift nurse said we could take Lowri home for the night as long as we were back by ward rounds at 7.30am. She said she didn’t want to go home because she would have to sleep alone with Roosje away, so I said she could sleep in our bedroom. We had to wait while Tim drove back from Tauranga, then after having her line flushed we went home.
We put Lowri’s mattress on the bedroom floor and she went straight to sleep. Tim and I worked out what questions we still needed to ask about her treatment, and did some washing.
Dropped Roosje & Liam with friends and took Lowri to ward 24B at Starship. They weren’t ready for us so we waited for ½ hour, went for a coffee at McDonalds, waited some more, met a surgical houseman who took a preliminary history in the breastfeeding room (only available room) then had to hunt for a bed in a side room to do an examination. They wanted to see her ultrasound pictures and report from Whakatane. Apparently, as I had paid for them they actually belong to me and I should have been given them to bring with me. Tim phoned East Bays Radiology who said they hadn’t sent them yet, but would right away. From there we took her for another wait in the ultrasound department, then another ultrasound. She was given a gloopy drink designed to show up her gut on the CT scan which we were told would be at 2.30pm. She had a deadening paste put on her inner right elbow and the backs of her hands ready for needles to be inserted later. From there on to the X-ray waiting room and on for chest and abdominal X-rays. Needless to say Lowri was “hungy”, but nil-per-mouth until 2.30pm. Back to the ward where a bedroom was found with a bed for me, but not one for Lowri yet. Unfortunately it was a room for burns patients so was temperature controlled and pretty warm. A small fan was found. Tim & I took a turn each to sneak off to the golden arches for a little lunch. When I came back a second bed had been found and Lowri had been moved into the treatment room to have a luer put in for blood to be taken and for a marker fluid to be inserted for the CT scan. The houseman was limited to two sites in her right elbow and the back of her right hand as her left elbow has eczema and she sucks her left thumb. After two attempts to find a vein with the needle the surgical houseman handed over to the oncology houseman who reduced her to major screaming with his attempts. Meanwhile Tim was discussing Lowri’s future treatment with a doctor from the oncology department.
She was to be signed up for research study run out of the US (NWTS) to try to find not just the best treatment, but also to find indicators for susceptibility to Wilm’s tumour. The Oncology houseman finally found a vein, but it dried up after one blood vial was filled. At this point the CT people had phoned up to a couple of times to find out where she was, so they finally said send her down and they would put their own luer in. We took her down to X-ray again and their anaesthetist found a good vein fairly quickly, but with 3 of us holding down a screaming Lowri once she guessed what he was going to try. He refused to do the bloods in case it blocked up the line before the marker was introduced, so we were both praying that the surgical houseman could use the same line afterwards and she wouldn’t have to look for another vein. Onto the CT scan bed, but another wait whilst the previous patient’s scans were processed by the computer. Lowri finally fell asleep and wasn’t aware of the CT scan or the marker being put in. Tim carried her back to her bedroom and we let her sleep on. The surgeon came to visit us to tell us a little about their plans for her. He told us that the staff involved in her case would be analysing the results of her tests tomorrow and her kidney, or some of it, would be removed on Wednesday, Thursday or Friday. He thought he could see marks on the CT on her other kidney that could mean that she would be predisposed to getting this same tumour on that kidney also. He may have to take a biopsy of the other kidney while he has her open. He will cut right across her abdomen level with her navel from one side to the other. He ordered blood pressure tests every two hours through the night.
Lowri woke up in time for dinner, which was her favourite chicken "bones" and veg. We cheated and ate the ice-cream first !!
Tim left at 7.30 to see to Roosje & Liam, and to organise people to look after them over the next couple of weeks. We are going to have to rely heavily on neighbours, friends and family.
Lowri and I stayed up watching the Last Night of the Proms and watching the lights over Auckland city. We saw the Westpac Rescue Helicopter come in and land on the roof really close to our room. On the news it said that it had brought a baby in serious condition from a quadruple fatality car accident in the Waikato. I feel like we are living in a bad dream here.
Lowri was scared to go to sleep because she thought that the nurse was coming back to stick needles into her, so she stayed up for her 10pm blood pressure reading just to make sure.
I got a birds eye view of the fireworks on the Sky Tower at midnight, and thought that I would probably never look at New Years Eve in the same way again.
We were woken up at 1.20am by the rescue helicopter again, which was landing just out of sight below our window. Don’t know who they bought in this time, but not a good start to the year for some other child. We also were woken three times by the nurse taking Lowri’s blood pressure, and twice by her flushing through the line in Lowri’s arm. Not the best night’s sleep on record.
On the morning of Tim’s Mum’s funeral Lowri appeared next to our bed and told us she had a sore tummy. Tim took her off to the toilet where he noticed that she had a large bulge on the left side of her abdomen. The bulge and abdomen felt hard. With the funeral at 11am we phoned the medical centre and asked for an appointment as early as possible, and with Liam in tow, and after a quick shower, I took her in for 8.40. I was thinking “hernia”. Lowri added sore ears to the list, and the doctor looked at her tummy and her ears and then asked about family history of kidney problems. I told him about the problems on both sides of the family, but added that neither family had problems until later in life. The doctor told me that he suspected that she either had an enlarged spleen or cysts on her kidney. He said he would like an ultrasound done and would try to organise one for later in the day, but he wanted a urine sample from Lowri in the meantime. As Lowri had not had anything to drink yet that day she could not provide a sample, so I told the doctor that we would go down the street for a “coffee” and bring back the urine sample when I had one. Liam had wanted to have a new shirt for Nana’s funeral as both his 10-years-old boy cousins had new clothes, so I thought we would be able to nip into Farmers (department store) before taking the sample back. I remembered that I had some cans of lemonade in the car so we were at the car drinking lemonade when the doctor rushed up and said he had arranged for her to have an ultrasound immediately and a blood test at the hospital after that, and that he would see me back at his surgery at 4pm. By this time it was 10am.
The three of us made our way to East Bay radiology and waited there for 15 uncomfortable minutes before getting to see the ultrasonographer. We sat in relative silence whilst he had a good look inside Lowri’s abdomen, with just Liam asking me “What’s this?” and “What’s that?” and “He’s taken 16 photos”. Tim phoned me on my cell phone to ask where we were and I fobbed him off with “We’re just down the street, we’ll be back soon, no they don’t know what it is but I have to take her to the hospital for a blood test, the hospital is the best place for children’s blood tests.”. When the ultrasonographer had finished he told me that she has a “huge tumour” on her left kidney, that her right kidney looks fine, her spleen was pushed up out of her abdomen by the tumour, and no, it wasn’t a cyst. He told me that Auckland was the best place for us to be and that we should go to Starship children’s hospital on Monday (New Years Eve) for a CT scan. He advised me to take my husband with me to see the doctor at 4pm. We walked out to reception where the lady told me it would be $121.00 and I promptly burst into tears. She told me she could send me the bill if that was a problem, and Liam said “That’s a lot of money Mum, is that why you are crying”. That helped me to get a grip.
I decided not to tell Tim until after the funeral, so we rushed into the house, did the urine sample, and got changed for the funeral. . T, Tim’s sister-in-law, phoned her sister, who works at the hospital, to arrange for me to meet her so that the blood could be taken quickly, and when I said I didn’t know her sister T said she would come with me, which was just as well as I didn’t really know where the hospital was, never mind how to find my way around it. Everyone else got into cars to go to the funeral, while T, Lowri and I got into the car to go to the hospital. I hadn’t even got to the end of the drive before I blurted out to T what was going on with Lowri. She held me together through the visit to the hospital, the blood test and into the church
Half way through the service Lowri let rip her catch phrase “I’m hungy” (sic) and I realised she had not yet had anything to eat. One of Nana Betty’s best friends and the celebrant for Tim & mine’s wedding and all our children’s Naming Ceremonies, came to the rescue with a Werthers butterscotch lolly. Lowri promptly marched across to the pew where Liam was and stuck out her tongue with the lolly on it and said “Nyah nyah”. She was still “hungy” so we fished out a cough lolly which Lowri accepted despite being told it might be hot. We never saw what happened to that lolly but Lowri was walking around for some time with her tongue hanging out and her nose screwed up.
Somehow, with help, I held it together during the service and interment, though couldn’t manage to sing “All things bright and beautiful”. When we returned after the interment I told Tim what I knew.
At 4pm we kept the doctors appointment where the doctor told us that it seemed very likely that she had a “Wilm’s tumour”, a form of childhood cancer of the kidney. He gave us some printouts from the internet about it, told us that in Lowri’s case it would be 99% curable, that the kidney would have to be removed as there would be little viable kidney left. He told us that we should report to ward 24B at Auckland’s Starship Children’s hospital which he had arranged, and gave us a letter of introduction.
Shell-shocked we returned to the house.
This site was last updated 09/11/03