Still toughing it out (Day +41)

The past few days have been a bit of a mixed bag for Max. He tires very quickly, has not been very talkative and has become very clingy. That said, he's had a lot of fun playing with his play-doh that the play therapist made for him and dropped off on Friday and has enjoyed becoming reacquainted with his Wiggles 'Crocodile Hunter' DVD. And every now and again, from nowhere, he'll let loose with a witty aside just remind us of what a brilliant little champion he is.

As mentioned in the previous blog, Max received some sizeable doses of steroids this week to try and counter the effects of the Graft Versus Host Disease (GVHD), a common complication of Bone Marrow Transplants that Max was diagnosed with last week. Unlike say with an organ transplant where there is a risk that the body can reject the donor organ, with a bone marrow transplant, the opposite is true; the risk is that the donor marrow can reject the recipient's body. To the new bone marrow, or specifically the T cells that the bone marrow produces and which form a core part of the immune system, everything in the recipient's body is foreign. The risk is minimised by firstly sourcing a bone marrow donor (or even better, a cord blood donor) with as close a match as possible to the recipient, and secondly, post transplant, administering drugs such as cyclosporin and prednisolone to suppress the immune response.

The three places they look for GVHD to show up are in the skin, in the gut and in the liver. Max has showed signs of it in both his skin (the rash and itch) and his gut (the poo). The liver, so far, is by all reports ok. As at today, the steroid treatment has appeared to have lessened the symptoms of the GVHD but there still looks to be some way to go before he is out of the woods. He finally pooed again today after a gap of about 36 hours. For those of you who are interested in such things, the poo was of a much thicker consistency than his previous efforts of the week, kind of like a sinewy paste. This is a good sign that his GI / tummy troubles are starting to settle down. As for the skin, he has gradually showed signs of improvement over the past few days, pretty much shedding one complete layer of skin for what appeared to be a less affected layer. He seemed a lot less itchy and was a little more back to himself. Until today that is. Late this afternoon, the rash on his skin flared up again and he was noticeably itchier. Whether this has been triggered by an 'issue' with a 'dose' of cyclosporin, the tapering of the steroids, or the blood transfusion he received this afternoon, we don't know. Hopefully we can get to the bottom of it tomorrow...

As for the infection that appeared Thursday week ago and was the reason that Max was initially readmitted, it has fortunately been a bit of a non event. Max will continue to be administered the antibiotics Gentamicin and Timentin until the end of this week (Thursday or Friday) just to make sure that the infection is completely eradicated and to cover him just in case anything other infection decides to rock up and make itself unwelcome.

Bee and I have had a couple of opportunities to get out of the hospital, with thanks to Peter and Julie. On Friday, we were fortunate enough to attend the wedding of our friends Anthony (Chocko) and Sarah. It was a wonderful and classy evening for a wonderful and classy couple. It was great to catch up with everyone (it's been a while). We look forward to do it again in the (hopefully) not too distant future.

Apologies for the lack of updates. We've taken a bit of time to get back into our hospital living routine. Hopefully the updates will be more frequent as we get into the groove of things. For those wondering where all the football references went, like Hawthorn's season, they've been consigned to the lavatory.

Cheers,

Tim

Itchy, sore and pooey (Day +38)

I apologise in advance if this post is poorly written, but I know many people are eager for some news...so where do I start? As Tim mentioned in the previous post, I came in to the hospital last Thursday morning for a routine blood testing session and appointment with Dr T.....and 1 week on we are still here!

The extremely rare bug that Max 'somehow' picked up...(I have my suspisions)...has been cleared so far... although we were told it could re-emerge, luckily it is sensitive to a lot of antibiotics so is not too mch of a concern. So, that is not why we are still here.

Max's skin biopsy results came back on Tuesday showing that his rash was due to Graft vs Host Diesease (GVHD). It is a real bummer as we were told all along that the risk of getting GVHD is significantly reduced when using cord blood (as opposed to bone marrow), but of course the risk is still there. He was put on a ridiculously high amount of steroids for a few days, and today they have been reduced (as being on this high dose for too long can cause additional complications). His skin looks as though he has been doing it tough in the Bahamas (The Dr's equated it to severe burns) and now his tan/burns are shedding. Nothing has been sticking to his skin which has proved a tad of an issue with regards to the dressing which is keeping his Mr Hose (Hickman line) site covered up and infection free. We now have a sock-like device covering his torso, and hope that someone can come up with a better and more permanent solution tomorrow.

Max's magnificent motions of the bowel have also been a concern. They also believe this to be GVHD (of the gut). He was put on NIL by mouth for 24 hours, to try to calm down his bowel......but this is a catch-22 as the huge doses of steriods he is on is making him ravenous. Max must have thought I had gone nuts with my continual response to his food requests being....."I can't find any at the moment". Unfortunately he is not a stupid child, so I have now begun telling him the truth. He gets it, but is not a happy chappy. The dietitian has said that Max is allowed to eat very small amounts of food which are low in fats, sugars and lastose. Dr's have ok'd this but said it the diarhoea continues Max will need to go back on intravenous feeds (TPN). Naturally the mention of intravenous feeding set alarm bells ringing......this means an extended stay in hospital..... ..bummer, bummer, bummer! Message to Max's bowel: 'please start producing at least some semi solid number twos!!!'

Today Max has also been having quite low temperatures (34C-35C) and very high blood pressure readings. High blood pressure may be related to the high dose of steriods he is on, and low temperatures can be a sign of infection - but seen together can be a sign of neurological problems......sigh....just something else to add to the mix. Some simple tests were done on him today, and naturally he ws fine, but that was not something I needed to end the day!

Here's hoping tomorrow is the start a better day and each day he gets better and better.....we all want to go home!

Thankyou to everyone who has sent such lovely messages....(and gossip!). I will get around to replying to you all...have just been too tired and lazy to do so.

xxx to all

Same same but different (Day +34)

Just a quick update. Max is still in the Hospital. They have identified the infection: good old Delftia acidovorans. Apparently it's not a common one for transplant patients to pick up but since it seems to have responded to treatment, the doctors don't seem to be overly concerned by it.  He is on a course of three different antibiotics including Tazocin, Vancomycin and Gentamicin. Hopefully we can drop one or two of these once the doctors have reviewed his latest test results tomorrow.

He continues to be irritated by the rash on his skin. He didn't sleep particularly well last night with all the itching. They have doubled the dose of prednisolone (steroid) so hopefully this starts to kick in and give him some relief pretty soon. We are eagerly anticipating the results of his skin biopsy which we should get back on Tuesday. These should shed further light on the origin of the rash The poo problems have also returned with a vengeance. Whether its the mix of drugs, the upping of the magnesium doses or just something he's eaten, we don't know but he's unleashed numerous volcanic eruptions over the weekend (bonus points for the topical metaphor). They're not enough to stop intercontinental airline travel, but the have they have certainly left their mark on the local environment, turning many a glacier white facewasher brown.

He's was pretty miserable for most of the weekend but he came good this evening. Hopefully it's a sign that he's on the mend and that he's in for a happy week.

cheers,

Tim

"Just when I thought I was out, they pull me back in" (Day +31, +32)

Unfortunately, due to showing signs of an infection, Max is back in the hospital. Fortunately he still seems well but the doctors want to keep him in as a precautionary measure. Not that we ever expected that the road to recovery would end on leaving hospital the first time, it is a bit of a shock to be back here again so soon. Hopefully this is just the equivalent of encountering a "Road works next 1km : Slow Down" sign and that we are all motoring along at speed soon after.

Max came in to hospital on Thursday as planned for blood tests and an appointment with Doctor T. About an hour and a half after having the blood drawn, whilst waiting for his appointment, he got the shivers. Quick thinking Bee wrapped him up in his jacket and got a nurse to check his temperature and sure enough it had spiked to 39.2. We were later told that it was possible on flushing his lines a bug of some sort was pushed back into his body, triggering an infection in the blood. Tests have come back today showing that he is positive for a gram-negative bacilli (rod) infection. They will continue to keep testing the cultures to see if they can identify the exact type of the infection in order to determine how to best treat it. After the initial spike, his temperature returned quickly back to normal (and before any meds were taken). He will need to be on antibiotics for at least the next nine days, time which most likely will need to be spent in hospital. In other medical matters, over the last couple of weeks a rash has developed on most of Max's skin and has become progressively more irritating. Today a skin biopsy was taken for testing to try and determine the cause of the rash, whether it be a symptom of Graft Versus Host Disease, a reaction to his medication or something else. They have also upped the dose of steroids to try and get the rash to settle down.

The good news is that despite, for three days, having had such a good time getting reacquainted with home Max is happy to be back amongst his hospital friends, many of whom have dropped by in the last couple of days to say hello. We are back in the fishbowl but we are now in room T3. As mentioned above, apart from his rash, he is not unwell and appears to be in good spirits.

Thankyous:

• Steve, Janine, Maddie, Sean and Sophie for the wonderful balloon arrangement. Unfortunately Max has yet to see it but i did take plenty of photos.

Cheers,

Tim

Home Sweet Home (Day +28, +29)

Need we say anymore?

Numbers, Numbers, Numbers:

White cell count: 4.7 (6.0-17.0)
Neutrophils:  2.91 (1.5-8.5)
Haemoglobin: 121 (110-140) *
Platelets: 12 (150-400) *


* transfusions are topping these levels up at the moment, so they are not a true indication of where he is at.

Thankyous:

• Dave, Renee & Eryn for the cool books.
• Henry S for the lovely card.
• Granny Pat & Gramps for the Dora Easter Egg and Biscuits
• Oma & Opa for the spotless house, from the skirting boards to the light fittings

Postcards from North Melbourne (Day +26)

It's been a few days now since we've updated the blog. Since leaving the hospital we've been readjusting to life with all three of us back to living under the same roof, albeit not at home but in a smallish studio apartment across the road from the hospital. Max has been coping very well with life on the 'outside' and is enjoying the freedom of not being permanently attached to an IV pole. He's spent most of his time cooped up in the apartment but yesterday we did manage to go for a couple of walks. It's a relief that Max does not put up a fuss when we put on the face mask that he is required to wear anytime we leave the house. He has already worked out that it is a necessity, asking when the prospect of going for a walk was raised "Where's Max's mask? I need to put a mask on". And just like a Japanese public transport commuter he seems quite happy to wear it and hasn't, apart from the first time he wore it, tried to rip it off. 

On Saturday, Max made his first trip back to the hospital as an outpatient, this time just for some blood tests. For the foreseeable future he will be required to have blood tests every two to three days to make sure everything is tracking well. The results were ok and indicated that his platelet levels were holding well so there was no need for a transfusion. As he is eating quite well and, with a little help from left over easter eggs, is taking his medications orally without too much trouble, we decided to have his nasogastric tube (Mr Nose) removed. Apart from being sticky taped to his faced, the tube is not attached to anything; it simply dangles down from the back of the nose to the stomach, so it was quite easy to remove. Once the nurse had removed the supporting tape from Max's cheek she pulled on the tube like she was pulling down blinds and it was out in about three seconds. A few tears were shed but it was nice to see Max's unblemished face again. It was also a lovely feeling for all three of us to walk out of the ward hand in hand after being there for little more than an hour. Needless to say we prefer one hour visits to five week visits. We're back again on Monday for some more blood tests and an appointment with Doctor T.

Speaking of medications, Bee and I nearly had a nervous breakdown on Max's first night out of hospital when preparing what seemed like half a pharmacy's worth of medications for him to take (actually I should say that although Max is on eight different medications to be taken between twice and four times a day, we were told by the oncology pharmacist that this regime was pretty light on compared to some of the other kids that come through the ward). We were overwhelmed by just how much information we needed to recall and by how fiddly it was to ensure that we drew the correct doses from the bottle; all bar one are in liquid form. With no nurse to help us it was a pretty scary experience. Fast forward three days and Bee has well and truly become the med prepping master. Once the alarm rings, within a couple of minutes Bee has all the doses drawn and lined up ready to go. I have taken on the roles of sourcing the chocolate bribe and patient wrangler. We make a pretty good team.

Finally, a poo update. We know some of you have been following Max's movements very closely. Well, you will be thrilled to know that yesterday Max, for the very first time, demanded that his nappy be removed and that he be seated on the toilet where, of his own accord, he expelled three of the most glorious looking logs you're ever likely to see. Bravo Maxwell!


Depending on how the appointment goes tomorrow, we are looking to check out from the apartment for home sometime mid week. We all cannot wait.





The Numbers:


White cell count: 6.2 (6.0-17.0)
Neutrophils:  4.07 (1.5-8.5)
Haemoglobin: 118 (110-140) *
Platelets: 28 (150-400) *


* transfusions are topping these levels up at the moment, so they are not a true indication of where he is at.


cheers,


Tim

Maxwell has left the building (Day +24)

Well, the day has come at last. Max was discharged from hospital today after a final check up from Doctor T, five weeks to the day from when he was admitted. Max was a little freaked out on leaving but tonight was back to his cheeky inquisitive self. Bee and I in no particular order are ecstatic that this day has finally arrived, anxious about living outside the security of the ward and completely knackered physically and mentally so please excuse the short
blog.

We still have a long way to go before Max has completed his treatment; he still has medications to take, visits every second day to the hospital to make (we're back again on saturday morning) and so on, but today marks a mighty achievement for Max Der Starke. It's a celebration!

cheers,


Tim