Bernadette

Well I had treatment 1 today. I am staying in hospital overnight tonight to dose up on fluids and hopefully feel a little better. I feel pretty revolting right now but that will pass in a few days. I spoke with Dr Taylor and he said that I will have a CT scan in a fortnight and then he will assess from that whether I need anymore treatments. I am really hoping this is it as I really dont want to have to go through this anymore. I am totally and completely over it. If in two weeks I get told the chemo is all over then I can start to try to relactate and start to breastfeed Arielle again. There is a possibility my pituitary glands have been damaged and I may not be able to produce enough milk to fully breastfeed but I would like to try. Jane currently expresses enough milk for Arielle’s day feeds and Arielle loves the breastmilk. I am very lucky to have such a wonderful friend.  

Arielle had a hernia operation today. She had an inguinal hernia – this is a small opening in the abdominal wall where something has fallen through. For Arielle it was her right ovary and fallopian tube that came through. She also had a small hernia starting on her left side. Had she gone full term this problem would most likely have corrected itself within the womb however once the baby is born it does not fix itself. As the opening tends to close up and strangulate the hernia it had to be operated on immediately to save her ovary and protect her from severe infection (it would go gangrene had the opening closed). It happens in about 2.5% of premmie baby girls (25% of premmie baby boys). She had the surgery this morning and has been asleep for most of the day. She is staying in hospital overnight (I am with her) and should be released tomorrow morning. Her only problem at the moment is that she is having little episodes where she is forgetting to breathe and/or holding her breathe. She only went blue one time and hopefully it should settle within 24 hours. She is not feeding that well but again that is to be expected. Apparently there is not much pain afterwards and they often either don’t need any painkillers or just Panadol for 24 hours.

As you can see from the pictures the house renovation is coming along really well. The expected completion date looks like it might be pushed back to February unfortunately. The roof and framing is finished and now they are working on the inside. As you can see from the photo of Tiernan he loves being a little helper (the Bosch tool is a toy one by the way!!).

My white cell count has got back to normal after my daily injections and thankfully I can stop them today. So all going well chemo no 12 should be going ahead on Tuesday.

My sister Natalie arrived on Saturday and it has been just wonderful to have her back home. It has been a tough year for our family this year - a few weeks ago dad was diagnosed with prostate cancer and now with Arielle having to have her operation you begin to wonder how many bad things can happen to us in a year! Dad’s prognosis is good - he will have an operation to remove the cancer and the doctor is confident that will remove all of the cancer. He will take about 2 months to recover but at least at the end of it the cancer will be gone.

After the luck (or lack of) we have had this year we will be very glad to see the end of 2006 and the start of a fresh new year!

I hope everyone else is well and hopefully one day we will be able to make it to mum’s group! 

Well chemo number 11 finally happened on Monday. I had chemo in the morning and then had to stay until Wednesday morning. I had heaps of fluids pumped through me and felt much better than last time. I still feel worse than I did whilst pregnant however nowhere near as bad as it was after cycle 10. They kept me in for 2 days as my neutrophils and white cell count dropped dramatically after chemo. By the time I left on Wednesday I had become mildly neutropenic. As the levels tend to decline until day 10 it was decided to start me on daily injections to increase my neutrophils as they could not safely go much lower than I was without risking infection and a trip back to hospital (and most likely a long stay). So Cameron has the daily task of giving me my injections - I still have a needle phobia so it is not fun. Hopefully cycle 12 will go ahead in a fortnight and then hopefully the tests after that will be good and I wont have to have anymore (there’s dreaming!!)

Well on Friday I managed to get myself out of hospital - so chemo had been delayed all week. I have a sinus infection but it does not look like anything sinister so I was allowed home. Hopefully chemo will be going ahead tomorrow – fingers crossed.

Arielle was weighed last Wednesday and she was 2.5kg. Her weight gain is fantastic and far exceeds expectations! She is going to be a chubby bubby in no time at all!! Although she is growing she is still quite tiny as you can see in the photo of Arielle and dad. She continues to do really well at home and is still a little dream baby. She is well settled in a routine now of 4 hourly feeds overnight and 3 hourly feeds during the day. For most feeds she is having 20mls to 60mls more than she has to which is really great. Other than to let us know she is awake and ready for a feed she rarely cries. Even when she does cry for a feed she stops once you walk in the room and is quite happy to go through the normal routine for a feed preparation without crying. Tiernan still loves her to bits and is still a very proud big brother. He loves to nurse her and thinks that burping her is especially funny.

Unfortunately I have landed myself back in hospital. Last week I ended up with a slight throat infection and was put on some heavy duty antibiotics (as I was neutropenic (depleted immune system) they were being extra precautious). That has kept at bay however on Sunday I developed an infection in my caesar wound (suprising as it has nearly been 6 weeks since the caesar). My neutrophils had started to rise however they are back on their way down again and my blood pressure has dropped and remained low, so I am on two types of antibiotic by drip (to combat the infection), high volumes of IV fluids (to get my blood pressure back up) and injections to get my neutrophils and white cell count up - fun stuff!! I have gone back to being a woss about injections as well which isn’t good considering all of this!! So chemo is off for today and won’t be back on again until all of the infections clear and my white cell count improves which they are suspecting should be later this week or early next! Just to complicate life a little more, Tiernan has a tummy bug so I cannot see him and we need to try to keep him away from Arielle as she is still a little fragile. So Arielle is going to join me in hospital for a day or two until Tiernan is better. I am missing both children heaps so at least having Arielle here should make me happier too!! And it means Tiernan gets some one on one time with Cam so he should like that too.

Monday’s chemo did not go ahead as my white cells and neutrophils continued their downhill slide rather than improving. I am now in a mildly neutrophenic state which basically means I have a depleted immune system at present. So I am going to give it another go next Monday. If the counts are still low then I will have an injection to boost my neutrophils. I was given the choice of having this yesterday however it is a painful injection and can cause quite severe pain for up to two weeks afterwards so I decided to see if my body would come to the party naturally. I joked to my doctor that I had never had any of these troubles having chemo whilst pregnant and he commented that during pregnancy it is quite common for your white cell count to increase. Therefore he suspects the pregnancy was actually aiding me in keeping my white cell count normal whilst undergoing chemo!!

Just a quick blogg to say that Arielle is just loving it at home. She has settled in really well and last night was an absolute dream baby - she had a feed at 8.30pm then at 12.30am and then at 5.30am - not bad for only a month old (must have been her one month birthday present to us!!).

Chemo did not go ahead on Thursday as my white cell counts were too low. I am now scheduled to have it on Monday instead - hopefully my counts will be up by then.  

Take a close look at the photo and you will see that 1. Arielle does not have a feeding tube in and 2. we are sitting on our couch at home. Yes that means Arielle is now home. She came home on Monday (we had to take a respiration montior with us and watch a video on resusitation before we were allowed to take her). It is lovely having her home and Tiernan just loves having her here. Well this will be a quick blogg as this is one of the rare times both Arielle and Tiernan are asleep and I am catching up on a million and one things to do!

It has been a difficult week for me not seeing Tiernan and Arielle however Arielle continues to do well and on Friday her doctor gave us the wonderful news that if she continues to do well over the weekend then we can take her home on Monday or Tuesday. She is tolerating bottle feeds now which again is fantastic given her age. We cannot believe she will be coming home so soon - she would have only been 37 weeks next Tuesday. It will be so lovely to have her home and to have our family altogether.

The results on Thursday turned out to be inconclusive. The CT scan still shows a mass there however the mass did not take up the PET scan injection or the Gallium scan injection. We had originally misunderstood this to mean there was no cancer however the doctor explained that only 70% of lymphoma takes up either PET or Gallium injections. The remaining 30% do not show on either scan. The dilemna he now faces is that as I never had these tests to start with he does not know whether my lymphoma originally was PET or Gallium active and is no longer active or whether it never would have showed up on these scans anyway. The fact that the CT still shows a mass is causing the issue as there is no way to ascertain whether it is still active cancer or just scar tissue. Due to various factors a biopsy cannot give conclusive results and the mass cannot be removed due to where it is. So the current plan is for me to have two more chemos (12 in total) and then I will have further CT scans then. If the mass has reduced in size at all then it indicates that it is still cancer (as chemo would not reduce scar tissue). If that is the case then he may look at radiation. If it has not reduced in size he is uncertain of what to do next as he obviously does not want to stop treatment if there is any cancer left but does not want to put me through any more treatment than he has to. So basically he will make the call after the 12th treatment. We are ok with this result as at least it does not say it is definitely active cancer. It is not the best outcome but certainly not the worst either.

This week has been pretty tough as believe it or not I have reacted worse to the chemo this time despite having all of the anti-medics! I have never felt so nauseous and tired in all my life! Maybe my pregnant body shielded me from the effects of chemo somehow! This is certainly tougher than having chemo whilst pregnant! I had a little bit of an episode yesterday with severe chest pains after dry reaching. After a quick dash to the emergency department I was assessed and given morphine (first time in my life I was begging for morphine - usually I refuse it as the injection hurts nearly as much as the pain it is trying to fix!!). They could not find a specific problem however suggested that I had probably torn a small hole in my oesophagus due to the dry reaching and that it would eventually repair itself. I was kept in overnight for observations and should be released later today.  

Arielle is continuing to do really well and has now reached the magical 2 kg (2054 gm to be exact). So from a weight perspective she is now allowed to come home. However we have to get her bottle feeding - she has 8 feeds a day and yesterday she had 5 feeds by bottle which is pretty great considering she is only a corrected age of 36 weeks. We are sure she keeps smiling at us but the nurses insist they cannot smile yet! I was unable to see her yesterday (due to my quarantine period) so Cam spent time with her and like me felt awful at having to leave her at the end of his visit. We both cannot wait to come home.

I started chemo again yesterday (round 10) and have decided to take every drug possible to combat the side effects, so I am now having 3 forms of anti nausea drugs,2 forms of anti diarohera drugs and a drug to increase my milk supply, as well as iron and vitamin supplements and a few others thrown in there for good luck - yippee - I am rattling with all of these pills. Although I had the usual side effects for a few hours at least once the drugs all kicked in I am feeling much better. I was also allowed to come home which was just lovely. The only catch was usually in hospital they give me a sleeping pill as one of the anti nausea drugs causes insomnia and you guessed it I forgot to ask to get some to take home so I have only had 3 hours sleep.

I have now had the results of two of the scans - one shows that there is still a tumour there however that scan just shows the size of the tumour and cannot distinguish between scar tissue (which will not be removed by any more chemo) and active cancer. The other scan (PET) showed no signs of active cancer. Although in itself that is a great result it is not a final result. Lymphomas are either PET active or Gallium active but not both. As due to the radioactive injections required for both scans I was not able to have them initially so they do not know whether my lymphoma was a PET active or Gallium active one. Therefore I need to wait for the results of Thursday’s Gallium scan to find out if there is still any active cancer. The best outcome would be the Gallium scan showing no active cancer. If that is the case then the doctor has agreed to let me have a total of 12 chemos which would mean only 2 to go. The worst result (other than the currently inconceivable result of the cancer becoming untreatable) is that I could have to have 6 weeks of radiation treatment as well as more chemotherapy and maybe bone marrow transplants (they are a last resort though as I understand it).

The doctor has also agreed to trial me having chemo every 10 days instead of 14. It will take a toll on my body and they will have to check my blood works to make sure I have recovered enough but if it is possible then it will cut the remaining time on chemo down. My reasoning behind this is that it would allow me to continue expressing milk (and throwing it out as it is chemofied) and then resuming breastfeeding Arielle once the chemo is over - which if I only have 2 treatments to go would be in 34 days (20 days till my last chemo and 14 days to let it exit my breastmilk).

So we are trying to remain hopeful but not banking on it. Whether it is Gallium active or not is anyone’s guess. Nothing at this stage points us one way or the other so we will just have to wait and see!