Shingles - a picture says a thousand words

We went to hospital yesterday and Seths oncologist and his bone marrow doctor confirmed that it is a classic straightforward case of shingles. Everyday the blisters increase and so does his pain. Today he is very tired and miserable. At this stage the shingles will not affect his transplant. They are postponing chemo until they have some control over the shingles. He is on some antibiotics and pain relief. Apart from that, we sit and wait and hope it stops getting worse everyday. It is now moving up his face. It has made it to his cheek. I just hope it doesn't make it to his eyes. I think the pictures say it all.

Photos explained

We are still home and loving it. We have been back to the hospital for check up visits. Seth was supposed to get chemo on Thursday last week but it didn't happen. The doctors were waiting on approval from the people conducting the study that Seth is on. Approval only happened Thursday morning so they were unable to get the chemo organised in time. We returned to hospital on Monday(yesterday) and while we were sitting waiting to begin, Seth came out in a blistery rash on one side of his head down his neck at the back and on the front of his neck. His oncologist came to see it and thought it may be shingles. He sent us home without chemo with instructions to call if the rash continued to increase. This morning, it had doubled in size so we will have to go into hospital tomorrow for the doctor to have another look and to advise us where we go from here and what it means for Seth's future transplant. I have no answers at the moment about how shingles will affect him or how they will treat them. I only hope they don't have to delay his transplant any further.
I would like to once again thank everyone who sends cards, letters, gifts to Seth and our family. I unfortunately have been unable to keep up with the thankyou's so I would like to express our gratefulness on this blog. We receive on average 1 - 2 letters, cards or packages a day. They are from as far away as Canada, England, Africa and India and of course all across Australia. They are from people we have never met and from people we know. They cross all generations from the very young to the elderly. They include photo's of families and letters about those families and gifts for our children and Seth. I cannot express how grateful we are to everyone who has taken the time out of their busy lives to let us know just how much Seth is in their thoughts and prayers. Our family is so very blessed to have so many rally around us. It gives us strength to continue this battle. Please know that every letter received is read by all of us and is kept in a keepsake box for Seth to look back on. Every letter is precious to us. Thank you one and all.

A bit of fun when all he would eat was twiggy sticks

His favourite trick to play on nurses

paint fight gone wrong with a mate

sleepy after ng tube inserted

A picture of mucositis on his lips

Green wee after blue smurf drug

You can do so much with a bald head

Getting ready for Riboviran under his tent

A face only a mother would love

NG trouble and home for a while!!!

Seth has had further trouble with his ng tube. It wasnt working correctly so one of the nurses came down to see what the matter was and thought the length was still incorrect. She remeasured and it turns out that it was a whopping 20cm's too far in. Seth is so scared of this ng tube now and it could have so simply been avoided had enough care been given in the first place. Obviously it needed to be pulled out and Seth did this himself. I'm so proud of him. Now he feels much more comfortable and things are now working well. I spoke with the BMT on Monday and they are holding off on transplant till the end of July. This is a six week wait and they are going to have to balance between the risk of Seth catching another virus and giving the cancer a chance to build up again. His 15 week treatment is now finished and normally they would be going straight to radiation and then transplant. In Seth's case they need to wait for two consecutive negative virus test results a week apart before they consider him free of the virus and would even consider a transplant. I was told by the BMT that RSV was the last virus they wanted him to catch as it has a high mortality rate. He can also get a negative result one week and a positive one after that. This is the reason they want to wait until the end of july - they want to make sure there is absolutely no chance he has any of that virus left before taking him into transplant. As the BMT like to scare me, they told me they have lost many kids even on ventilators from RSV and it makes it very clear in my mind that the decision to wait is the only way to go. The MRD results are back and they are negative which is exactly how they needed to be to continue to transplant. A great result that the doctors are going to need to keep that way until transplant and we need to do our best at keeping Seth free from any sickness. We have been able to come home now (since Monday) and we have our own feed pumps and feeds at home. Seth has 8 hours a day off his pump and it has been wonderful to be home. We go back to hospital Thursday for a 6 hour chemo treatment and hopefully we will get a better idea of how they are planning to treat Seth in the coming month and a half. If we are lucky we may be able to just visit once a week for chemo and checkup. We are clearing out of the unit on Thursday and the Leukaemia Foundation is going to try and get another one for transplant time. Now I am home I will be able to sort out the photo problems and I will get some up next post for sure.

Doing well and pressing on with more chemo

A HUGE THANK YOU to Ascot Sunday School over in W.A for the gifts and especially for all the work that went into the scrapbook. What an incredible way to get to know you all and to know that Seth is thought of so often. Seth is recovering well from his respiratory infection. He finished sitting in his plastic tent yesterday and both of us were extremely happy. He isn't a big fan of the tent but it has worked its magic and he improves every day. The nurses gave him a magic box because he had been such a good patient for them. As Seth is no longer eating or drinking, the doctors have decided to put him on a treatment called TPN (total parental nutrition). This is two bags of fluid - one is white and looks like milk - this is all the fats. The other looks like diluted apple juice and contains all the sugars and other nutrients he needs. Seth's counts are on the rise and he was given a gate pass on Sunday and Monday in between his time in the tent. Sunday Brett took him out to play a couple rounds of putt putt and they got back just in time before the rain set in. I caught Seth's infection and spent Sunday and Monday resting in the unit as much as possible. Yesterday the doctors did a lumbar puncture, chemo into his spinal fluid, bone marrow aspirate and nasal gastric tube. Unfortunately when Seth woke up he was in agony with the tube. This is a kid who doesn't make a peep when he gets the most painful of needles, didn't make a noise when he slammed his finger in the door and ended up with a massive blood blister under his nail and he was sobbing in so much pain. The nasal gastric tubes are supposed to feel uncomfortable and a bit weird for a couple days but not painful. They had to give him some strong pain relievers then they xrayed him to make sure placement was correct. They had in fact put the tube in too far. It had to be pulled out 5cm's. They had taped it incorrectly to his face which caused further pain as it moved around too much and it looks as though whoever did it was very rough and caused some trauma to his throat and nose. What cost is it to use gentleness? I am so cranky. As if he doesn't have enough to deal with and this finally broke his spirit. For the very first time in two years I saw him give up. I realize just how much his strength gets me through things. I wish for the umpteenth time I could take this away from him. So, things move along in here despite what happens and he was hooked up with a chemo called methotrexate last night. In the past he hasn't really tolerated this one well so I just hope that he doesn't end up vomiting as the pain would be enormous due to the trauma in his throat. Also some kids are known to vomit up their ng tubes - that is all he needs. I am going to post some pictures soon. Just having trouble with the quality an iPad camera gives.

The fevers have broken

Just wanted to let everybody know that Seth's fevers have finally broken. He is still unwell but the scary bit is over for now. Thank you for all your concern, love, comments, care and prayers. He is smiling again!!!

Turn for the worst

Seth is quite ill now with a virus called RSV. He is having very high temps (in the 40's) which iv Panadol is having a hard time keeping down. RSV is responsible for bronchitis so at the moment they are treating him with a drug called ribovirin which is given similarly to a nebulizer. They put a plastic tent over Seth's bed and use a fan to blow the medicine in over a two hour period. They then scavenge the room for an hour (which is they suck out the air). I am not supposed to stay with Seth while he is having the medicine as it is a strong drug and can have side efects on me. I can come in with all the safety gear while they scavenge. Last night he was 40.3 degrees and so upset that they let me stay with him until he fell asleep. He has to have this done at 2pm, 10pm and 6am. There is a bedroom in the parents room which I can go to sleep in when Seth is having treatment. The bone marrow team came to see me today and said they may need to push back his transplant even further. They need him to be virus free as it can be very dangerous to transplant patients. At the moment it is still late June but they have now booked dates for mid July in case they are needed. Sienna is having her independent doctor appointment today at 12. It is a check up that is looking after her best interests, rather than looking after Seth's best interests. Thank you to all the kids at the Hunter Valley for their box of goodies. Seth wasn't well enough to look at it properly yesterday but he is better today and will have loads of fun with all those activities. Thank you all for thinking about him and remembering him.

Boy in the bubble

Seth has been getting temps here and there. His counts are still not recovering, so we are waiting around in hospital for his neutrophils to return. Seth has been measured up for radiation and been shown around the place so he knows what to expect. He said he now feels much more comfortable with what's ahead of him as far as radiation goes anyway. Seth has just been for a bone scan of his entire body. He has a pain in his arm that doesn't appear to be getting any better. The doctors are just trying to rule out a bone infection. Yesterday we received some game changing and quite upsetting news. Seth has caught a bacteria that is resistant to one of the commonly used antibiotics. It is called VRE and it comes with alot of fuss and hospital protocol. He has been moved out of the oncology ward and into variety ward where they are set up to isolate patients. To cut a long story short, he has to remain in isolation and he is not allowed back into the oncology ward again. Anyone who is healthy cannot be affected by this bacteria - it is harmless. Seth himself will not be affected by this bacteria. It's just that immunosuppressed kids can catch it and then they will have a bug that is resistant to this particular antibiotic. To prevent the spread they have certain rules that are to be abided by. So far the rules seem to be a bit contradictory, for example, Seth is not supposed to leave his room or walk around the hospital, however it was okay for him to walk to the opposite end of the hospital twice to get his bone scan???? It comes down to bacteria somehow mutating themselves so that antibiotics will no longer be able to treat them. Seth will no longer be able to see the nurses he has built relationships with in oncology, he can no longer see the friends he has made in oncology over the last four months. He now has to forge new friendships with the nurses in this ward - who are lovely by the way. He cant be around any other kids now which is really sad. The friendships we made were what made this whole experience bareable. It is just another blow he has been dealt. I'm finally going to say it -"it's not fair". I was told today that most transplant kids usually end up with this VRE which is I suppose a little comfort. They told me that at one time they had so many VRE positive kids in transplant all at once so they had to enclose part of the oncology ward to house them all because variety was filled to the brim with them. So we both feel a little unsettled and a little sad right now, but as we always do, we will make lemonade from lemons:)