Day – 4 Chemotherapy…..tick!!

Orla completed her doses of chemotherapy today and she has done so well. She had her second dose of ATG in the afternoon and coped extremely well with this too. She didn’t have any of the symptoms that she had for her 1st dose, so we are feeling pretty happy at this point. She is a bit up and down in her mood, as high as a kite one minute and then upset the next. This is probably due to a number of reasons including….tiredness, the numerous drugs, being stuck in a room, and her biggest complaint is some severe nappy rash which we are trying our best to relieve before it gets worse and which she is now receiving some strong pain relief for.

Our baby sitter Shannon came in for a few hours while Mum caught up with a friend and Nan also arrived from Tassie. Only Ed and I and 2 other people are able to visit Orla whilst she is in the BMT unit and only 2 people can be in the room with her at one time. Nan came bearing gifts, some of her favourite things – books and balls!


Day – 5 The Horse of course!

I have had some trouble with internet connection so I have a few days to catch up on.

On Sunday, as well as the chemotherapy agents, Orla received her first dose of an antibody called Anti Thymocyte globulin (ATG). ATG is a protein extracted from a horse or a rabbit and Orla got the equine version! It works to deactivate the body’s T-cells, the powerhouse of the immune system at recognising foreign invaders. Generally one is grateful for T-cells functioning well as they fight infection. However in the case of transplantation, T-cells doing their normal job creates issues and can make one very sick, instigating the body to reject the new organ, in Orla’s case bone marrow. So ATG is a very important and clever drug but will also significantly weaken Orla’s immune system, in a positive sense against rejection but on the flip side make her at high risk of infection.

ATG is a very important part of Orla’s conditioning phase but it can also have quite nasty side effects. It can induce a severe allergic type reaction when administered thus a great deal of care is taken. There are number of medications given prior and during the infusion to dampen down the response and Orla’s observations where checked every 15 minutes. The administration was started off very slowly and increased slowly if she was tolerating it. A doctor was also present for the first 30 minutes of the infusion. Orla started off well, the minimum time it can take for the dose to be delivered is 6 hours. Orla was able to increase up to the maximum rate but her temperature became very high, her heart and respiratory rate increased and she became very drowsy. The infusion was stopped and then recommenced at a slower rate. After starting at 1pm it was eventually completed at 11pm that night. She also developed a significant rash on the lower half of her body when receiving the final couple of mls,the infusion was stopped and restarted once the rash subsided.

Ed and I were very pleased that the dose was completed and that she had got through it without too much of a problem.

Day – 6 A good one

The days leading upto transplant are counting down till transplant which is termed Day 0.

Orla was pretty much her regular self yesterday. Her chemotherapy was administered without a hitch. She had a bath, sat and ate in her highchair and generally messed about. Her breathing is much improved now that she has less secretions at the back of her throat since commencement of the antibiotic and the new anticonvulsant so we were feeling a reprieve and enjoying recharging our batteries.

Say it with Chemotherapy….. – Day – 9

It was only fitting that Orla commenced her Chemotherapy on St. Valentines Day, our love for her is the primary motivation to put her through this.

The chemo in the context of Orla’s treatment is termed conditioning. The chemotherapy is the agents used to condition or prepare her body to accept the transplant. The day started off well but it didn’t stay that way unfortunately and the best part was the fact that we don’t have to live it again. The surgeons made a visit to check she hadn’t done anymore acrobats with her lines, which she hasn’t. Funnily enough they are still scratching their heads about what happened with the first Hickman’s but the BMT staff aren’t surprised, they reckon things such as it are common. To be honest though, the BMT aren’t fussed by much, they seem to have a solution for every problem which is comforting but it’s hard to completely let go and trust 100%.

Orla sat happily playing in the bed watching TV etc while the first chemo agent, Fludarabine, was administered intravenously through her Hickmans line. This can cause nausea so she was given a medication to help with this and it was given over 1hour. The next agent is called Busulfan and was administered more slowly over 3 hours. The staff had to take blood samples to measure the levels of Busulfan in her blood 1,2 and 4 hours after the dose was completed so the lab could work out if her dose is correct. It has actually been increased for the next dose tomorrow, which is quite common. Throughout the Busulfan infusion, Orla appeared to be dribbling a bit which we thought was initially nausea, possibly a small bit of vomit. She became increasingly tired looking, however she had been awake since 4 am, as had I too! She was becoming irritable which we assumed was over tiredness and since she has never been the best sleeper we put it down to that.  Around lunch time her temperature became high again…..For some reason, she either has a bug somewhere, another virus or the effects of last weeks reoccurring, and the other issues became more apparent as the night went on. She did perk up after some paracetamol which she couldn’t have till after the dosing bloods had been taken. An antibiotic was also started after blood cultures, urine and faecal samples were taken.  In the evening, around 6 pm, we gave her a bath and following this she crashed asleep in the bed but then became unresponsive and the nurse had to call a “met call”. I unfortunately know that this essentially means….get medical help quick . It was at this point, I had to leave the room, the tiredness and the stress of the day had all caught up with me. Ed was here and a little more fresh than I! She came round to find about 10 people standing around her bed which she of course wasn’t impressed by at all!! So the problem was not the expected chemo but the anticonvulsant medication she was having to prevent fitting that can be caused by the Busulfan and not helped by the high temperature. She has today been changed onto another type of anticonvulsant and is less drowsy although still pretty groggy.

The other issue has been her breathing caused by the anticonvulsant decreasing her muscle tone, so her breathing is a little shallower than normal and she can’t cough as well to get rid of secretions. She is hence now requiring a small bit of oxygen when she sleeps. This morning the anti convulsant was changed, her temperature has settled as the day has gone on and they are keeping a strict eye on her breathing and closely watching her fluid balance, making sure what goes in comes out. The intricacies of doses and drug interactions are part of the rollercoaster ride we are now on, nonetheless it was a big day mixed with the emotions of commencing conditioning.

A funny story however amongst all the drama last night…..Ed told the night medical and nursing staff that Orla had refused her bottle and this is very out of character, only to discover the next morning that he had been trying to feed Orla the peptide mix intended for her nasogastric feeds. Essentially, this would have been like giving someone soy milk if they are used to cow’s milk, so no wonder she refused to drink it!! When the nurse did offer her cow’s milk, Ed assuming she didn’t like the hospital formula, she of course knocked it back. The dietician discovered it this morning, in his defence they are kept in the same bottles!!

Overall, today has been a better day and Orla although needing a small amount of oxygen, is breathing better. She has slept quite a bit which she needed. The intensive care doctors have seen her as a follow up to the metcall and have no concerns and the BMT team of course don’t seem too fussed!! No, they do take things seriously but they have seen all this before, it is us who hasn’t.

Drugs, drugs and more drugs!

Today was termed a day of rest and hydration for Orla however she declined to participate in the rest component! From 7am this morning until 9pm she had 40 minutes of sleep only. I would have had more if I had been to theatre yesterday. So it was no surprise that by this evening, she was completely beside herself with overtiredness and looked like a zomby. She had a visit from the music therapist during the day which she thoroughly enjoyed. The therapist suggested she play calming music in an effort to settle Orla but her efforts were futile, Orla attempting to play the guitar for the therapist and throwing her toys across the room!

Orla received quite a cocktail of drugs today. She is now on something for everything either into her stomach via the nasogastric tube or her Hickman’s line. She has commenced on antiviral, antifungal, anticlotting and anti fitting medication, all in preparation for her chemotherapy which starts tomorrow. She has also had quite a bit of blood taken. It is quite impressive how prepared the team are, Ed and I are a little concerned as Orla had a runny nose yesterday, although it was swabbed and showed nothing, and her chest sounds quite moist but the doctors are not too fussed!

We also found out that Orla’s donor doesn’t have Alpha Mannosidosis – a bonus to say the least!! I threw a curve ball at the Haematologist when she did the obligatory “do you have any further questions” as we were about the sign the BMT consent by asking did she know the donor’s level of Alpha Mannosidase, the enzyme Orla is lacking. She replied that she didn’t and that it was information she wouldn’t be able to find out before the transplant. I explained rationally I knew it was near impossible for them to reach adulthood, without issues, if they did have Alpha Mann however psychologically I really wanted to know that the bone marrow we were going to give Orla contained what she needed. She must have empathised with my pain and concern or feared the medicolegal ramifications if she didn’t find out and told me the next day that she had requested the test on the donor!

Take Two!

So Orla, who has baffled one of the general surgeons at RCH for moving her line out of position, went back to theatre for the 3rd week in a row for another Hickmans line insertion yesterday. They were able to use the IV she already had in her foot to send her off to sleep this time so no fighting off the mask. One bonus of having her Hickman line put in so close to her treatment commencing meant she had a nasogastric tube inserted while she was anaethetised which avoided some distress as they are normally awake. It is a relief to no longer have to disguise panadol and antibiotics in her bottles now too. While she was in theatre, they also removed the massive bandage and IV from her foot, a great idea by one of the nurses who must have rightly sensed the hassle she would encounter from Orla if she had removed them while she was awake!!

They must have put something in the anaesthetic yesterday, Orla was as high as a kite last evening after returning from theatre. Most importantly, the Hickman’s line is now connected and will stay that way from now on. She does however pull on the lines or try and eat them at every possible chance she gets!


A Room with No View!

Room with no viewOrla was admitted to the Bone Marrow Transplant Unit at RCH on Monday evening. It was a busy day at home packing and I must admit I procrastinated.  Like any big event in one’s life, there is much anticipation which is normally mixed with excitement and many positive emotions, in this case it wasn’t. I found it hard to believe the day had actually come, there is still a very small part of me that feels I am going to wake up! With each step it feels real but still hard to imagine the next step becoming a reality……like when we toured the BMT unit, to imagine us actually in one of the rooms, Orla in there for 6-8 weeks or more and not coming out.

So we departed home with a car full of stuff, everything had to be washed and cleaned and then cleaned again when we arrived at the hospital. The BMT unit is an isolated area of the main cancer ward and contains 8 rooms, 4 on each side of a central area. The rooms on one side have a view over neighbouring park land and the city lights and the other into other rooms in the hospital and the playground below. We were really hoping to get a room with a view, we lucked out and got a room with no view! Anyhow, we can only hope that our bad luck is to do with lines and rooms and not other more detrimental things! However we did find out you can put in a request to move, so we are hoping the room being cleaned across the corridor might become ours in a few days or so!!

During her stay, Orla will be in what’s known as protective isolation as a way to try and avoid her contracting infections when her immune system is non existent. The BMT unit’s air is filtered to reduce the risk of infections particularly fungal infections. You enter the unit through 2 sets of double doors and exit via another 2. The first doors must shut before the next open and you must wash your hands before coming in. Staff affectionately refer to the unit as the bat cave! Being inside the unit is quite different to a regular ward. The patients don’t come out of their rooms and ALL the staff gown and mask whenever they enter Orla’s room. Ed and I have to wear gowns and use antibacterial hand gel whenever we enter or leave Orla’s room and basically before and after any contact with her. She also needs to be on what is known as a clean diet which would be most kids dream, full of processed junk and no uncooked fresh food to avoid the reduce of any infection.

Ed and I were feeling somewhat apprehensive upon arrival to the ward. The enormity of what having a child has meant for us found us to be somewhat emotional. Fortunately Orla is completely oblivious to our heartache and proceeded to make herself quite at home laughing and thrashing about in her cot while Ed and I shed a tear or two.

So we arrived home Thursday evening and Orla was delighted to be here. She likes to push the front door open and she anticipated it with her usual mischievous grin and when I placed her on the floor in the lounge and handed her some of her toys she looked up and smiled wholeheartedly, she was very happy to be here and we were too!

So what does one do on their final weekend at home prior to a bone marrow transplant? We had some family photos taken! A very friendly photographer who with very little notice came here today to take some snaps. We are preparing for all outcomes and hope that we can tell Orla they were taken the day prior to her going to hospital but if the worst happens and we can’t, we will have no regrets and captured some lovely shots of our precious girl.

Hospital in the home have been visiting each evening to administer Orla’s intravenous antibiotic. She has been coping really well with the IV in her foot which is boarded up very well to keep it from moving. Orla has also now started an oral antibiotic to try and reduce the amount of a fungus called Pneumocystis Pneuomonia (PCP) which lives in the lungs of most of us without giving us any trouble however it can cause major issues when one is immunocomprised such as when undergoing chemotherapy.

We also did some normal things like going to the gym and we did have that BBQ and a glass of red wine!! We did enjoy the weekend but it was tough. Tough knowing what lies ahead, that the things Orla and we as a family get so much pleasure from we will not be able to do for a long time.

Home for the weekend!!

So after a long week and a number of false starts to get home, Orla is finally enroute to come home for the weekend. Ed is at the hospital with her now, I came home this afternoon for some sleep as the effects of sleep deprivation were starting to set in, and is bringing her home following her antibiotic. Hospital in the home will be visiting us over the weekend. 


And the temperature goes up!

We were all set to go home this morning. I’m  not sure what Orla was looking forward to but me, a BBQ steak and a glass of red but our plans have changed. Orla has had a low grade temperature for the past few days but this morning it was red hot. So she had blood cultures taken again to check if there is a bug in her blood or whether it is related to the RSV virus her nose swab came back positive for. Another IV line is now in her foot so she looks rather wounded. She has also had a Echocardiogram to check her heart prior to transplant. We have also had numerous visits from doctors and social workers from the various teams involved with Orla’s care. I really don’t know when we will be home now, possibly for an afternoon tomorrow so we can have a BBQ! Everyone is very nice and we are quite comfortable, we would just prefer this wasn’t happening so close to her transplant.