Bernadette

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!

Now that Arielle is in the “fattening farm” our contact with her is no longer limited. We are free to cuddle her as we please. So I am continuing to do her kangaroo cuddles (I don’t think I have explained the purpose of these – the idea is skin to skin contact which allows Arielle to maintain a good body temperature without using any energy and also her heart rate tends to slow down to try to match mine which also conserves energy – plus we both just love feeling so close). There are some photos of mum and dad with Arielle as they went in with me on Friday. Today, Cam, Tiernan and I went in and Tiernan helped us bath Arielle – they both seemed to enjoy the experience. Our little darling is continuing her fantastic growth and is now 1965 gms – not far to go to reach the magic 2 kg. Arielle started bottle feeding today – for her first bottle she drank half of it (20 ml) from the bottle and for the second bottle she drank all of it from the bottle. The nurses are very impressed with her as she seems to be tolerating everything so well.

I had my PET scan yesterday but I will not know the results until Monday or Tuesday. It looks like my boobs had performance anxiety. 18 days after Arielle’s birth they finally decided to wake up and realise they were supposed to produce milk. As life would have it though I can no longer breastfeed so the 100 mls I expressed tonight in one sitting (I usually get a sum total of 50 mls for all the expressions I do in a day) has to be discarded due to having the PET injection yesterday – what a waste!!  

Arielle’s growth has continued to amaze us and she is now 1880 gm which is a gain of 94 gms in two days. We called at 4am this morning to check her weight as she is usually weighed during the night. They told us that she had moved into Special Care Nursery 1 (aka Fattening Farm) as she is doing so well and that she had not yet been weighed as we could do that when we came in. We were also told we could give her her first bath. So we went in this morning and gave Arielle her first bath at age 16 days. Cam did the actual bath and I recorded the event as I am still petrified of drowning her (same as I was with Tiernan and it took me months before I had the confidence to bath him). Arielle loved the bath as the photo shows. She then had a little drink off me before deciding the tube feeding was a much easier option. She then had a nice cuddle with daddy before becoming a little kangaroo in my pouch (also known as my shirt). She is now only 120 gm off reaching the desired 2 kg which should take her no time to achieve. We now just have to get the feeds under control and she will be home.

The first photo is Arielle cuddling up to Cam yesterday. The second is of Tieran on a dirt pile at the house. I thought I would put up this photo of Tiernan as it is just gorgeous. His tshirt says “I dig chicks in pink” and has two boobies on it!! We bought it from the Qld Breast Cancer Association. When he saw it he said “boobies I love boobies” and kissed and hugged the tshirt! His obsession with boobies is a worry! The third is a front view of the “broken house” (so named by Tiernan when they started the demolitions) and the fourth photo is the back of the house. It is both scary and exciting to see our house in this state!

We saw Arielle this morning and I had a lovely 4 hour kangaroo cuddle whilst the boys had a great walk through Brisbane. Arielle was a very good little girl and had a 20 minute breastfeed - her best yet. She has now moved to 3 hourly feeds and that is one of her first steps to coming home. The next step which should happen sometime today is moving out of the isolet and into an open cot. The paediatrician spoke with us this morning and said if she continues at her current progress he would be happy to let her go home within two weeks!!! Her weight should easily be 2 kgs by then and the only thing we have to work on is getting her to feed from a bottle. So the news all round for Arielle is fantastic. She really has amazed everyone with her progress.

On the other hand for me I am feeling a little down and that probably explains why I have just eaten my way through a packet of chocolate eclairs!! I saw my doctor yesterday and he was happy with delaying chemo until next Tuesday. However between now and then I have to have a heap of tests between now and then. Other than the fact that two of them involve injections I am a little upset about having them as the injection I have to have on Monday is some form of radioactive material and it remains in my body for up to a week. That means I am not allowed anywhere near Arielle for the whole week and I am also not allowed anywhere near Tiernan for at least 48 hours and then must have limited contact with him for the remainder of the week. To say I am upset over this is an understatement!! The tests are necessary however as they are the only way they can determine how much of the cancer remains and more importantly whether it is still active. I am having my 10th chemo on Tuesday and if the cancer is not all gone after the 12th treatment then they have to look at other treatment options such as radiation treatment as I can have no more than 16 treatments and the last 4 must be done once the cancer is totally gone. Statistics like 80% cure rates (and therefore 20% failure rates) start swarming around my head at times like this!! But the key to beating this thing is to stay positive and that is what we are doing. I have two beautiful children and a wonderful husband and nothing is going to take me away from them!

It has been a few days so I thought I would add quite a few photos!! The first one is Arielle sucking her thumb - she used to always be sucking her thumb in the ultrasounds!! Speaking of ultrasounds - I checked this morning how much weight she was putting on whilst still inside and from 24 weeks it was about 100 gm per week and by the last ultrasound it had dropped to 60 gm a week. Well that proves she is better out than in - with each weigh in (done every 2 days) she is putting on around 80 gm which equates to around 280 gm per week!! This is about double what they expected as far as weight gain goes. She is now 1786 gm. She is allowed out of hospital at 2 kg (about 4 pds 6 oz) and once she is feeding by herself. The weight gain is obviously not going to be a problem but the feeding might be. She has had quite a few breastfeeds but is certainly not up to having her feeding tube out yet. They are amazed that she has fed from me as many times as she has as she is still very young and they do not expect their suck swallow reflex to be in action yet. So the plan is for me to keep trying breastfeeding each day until next Tuesday and then try bottles after that. We might yet have her home sooner than expected!! She amazed the nursing staff yesterday by attempting to roll over. They put her to sleep on her tummy which she hates. She wriggled around and managed to turn her head and her torso and then got her legs tangled up in the cords and could not turn totally. They fixed her up and put her back on her tummy and she did it again. In the end they gave up and just let her sleep on her back. She also pulled her feeding tube out and they had to put a new one in.

They kicked me out of the hospital on Friday afternoon. I was quite uset at leaving Arielle but health wise I was ready to come home. My infection has cleared and the wound is healing well. I am still sore but it is manageable on Panadols. I am spending about 4 hours each day doing kangaroo cuddles (skin to skin contact) and Arielle and I are both loving this.

As for chemo I have got another week’s reprieve and I am now having it next week. Hopefully that will give my milk enough time to get into full production (currently I am only expressing about 30 mls per day). Once I start chemo I am going to try to express and dump for the time I am on chemo and then resume breastfeeding once chemo finishes. That might not work as chemo could effect my milk production and kill it altogether!

Well that is all for now. It will probably be a few days between blogg updates as I am spending so much time at the hospital.