Max had his last dose of busulfan this morning (oral chemo through his nasal gastric tube). From tomorrow Max will start on the hard core chemo intravenously (from Day -5 to Day – 2). We’ve been told that Max will experience progressively worse nausea and vomiting up until Day -2 (Saturday) or Day 0 (Monday). Day -1 (Sunday) will be a drug free day, before the stem cell (cord blood) transplant occurs (Day 0). We’ve been told that we should notice hair loss within a few days of starting the intravenous chemo. As a result we’ve been advised to shave Max’s head before this happens, as many children tend to freak out when they find clumps of their hair coming out.
Vomit count today: 1.
At the first sight of breakfast today, Max proceeded to vomit. He settled very well afterwards so that was great. Hopefully he is that good after all his future vomiting moments. He only ate 2 dry biscuits and 1/4 cheese sandwich in total today. So intravenous feeds were increased to a maximum level. He spends most days playing with his cars, doing jigsaw puzzles, playing memory on my phone....and of course watching Dora over and over.....
Today I also met with the play and music therapists. Max had a ball jiggling away, especially with the Music lady…so much so he fell asleep part way through his arvo snack.
My back is so sore! There is no parent bed in here, just a window bench seat which I have tried to make up as a bed, but it’s definitely no deluxe bedding experience. Tim will stay the night with Max tonight so that I can have a good sleep (Good luck and sleep well my two honeies xx).
Tomorrow the nurses will insert a catheter into Max. So I guess it’s time for another name….. “Mr Pee Pee”!? (I think I’ll have to start up a ‘Mr Men’ series of books for Hospital insertable gadgets!?!?!) I’m really worried about this procedure. Given what we went through with inserting “Mr Nose” – which is a far less traumatic and painful process – I can only imagine this is going to be a shocker! (and I sure hope he doesn’t try to pull out that one OUCH!! On the up side; it will be great not having to worry about changing Max’s nappies every couple of hours…..woo hoo! (He wet through clothes and bed twice again today).
More Thankyous!
Uncle Jono, Aunty Karen, Griff and Evie for the package of Dora bits and bobs! Max LOVED it! To Aunty Jo for the mountain of food, books and trinkets….Tim is bringing some back to the hospital for dinner tonight…looking forward to it! And once I get back to the room later tonight, I’ll be feasting on Granny Pat’s cookies…yummy yummy!! xx
Hey Bee,
ReplyDeleteThanks for the update. Good to see the pic of Max smiling through it all.
Good Luck with the catheter. Thankfully that is only for a few days. it will be outbefore long and then onto the curative transplant.
Take care,
Sumathi
Dear all,
ReplyDeleteI am Reinhold, or Reino for short, and a friend of Peter from our time of studies in Rosenheim. I was only vaguely aware of the ill health of little Max. Now that Julie informed me about your blog I am more in the picture and can only say how sorry I am about all the pain Max der Starke has to get through. Not to speak of you the parents. One would like to help or to be of any assistance if possible. For now let me assure you that my thoughts are with you in the sure hope that this will be one of the last difficulties you have to get through before a final good recovery. Your comments show the strength you have to assume such a difficult time. May it stay with you as long as necessary.
With my best wishes,
Reino.
Dear Bee, Tim and Max
ReplyDeleteFor some reason we couldn't access your blog and thanks to Julie's recent email...we're now in and have your blog bookmarked. So much has been happening already and Max is looking so happy. The photo today with him playing is beautiful. We'll be reading the blog daily now and our thoughts and wishes are with you. Hopefully the next few days with the stronger chemo will go well.
Lots of hugs and kisses and love to you all from Petrina, Dave, Caitlin and Lana XOXO
Dear Bee, Tim & Max,
ReplyDeleteI have just read your blog archive and want to send our very best wishes to you all. I understand all you have written as your little man's current state is very similar to what my big man has gone through in the last 15 months. You are all doing an amazing job.
All our love Andi, Tim, Josh & Ben.xx.
Hey Bee,
ReplyDeleteI'm glad you started a blog. I didn't know for sure, but I thought I saw something on FB about y'all being in for the BMT, so Max has been in our prayers for several nights now. Keep us updated, and good luck to all of you. Here's hoping for a BMT as uneventful (relatively) as Ayden's!