Thursday Dec 12...day 13 Tim had a better night, more settled. Mouth still red and sore, no ulcers yet, sure to come. Matthew had his blood test this morning - they needed lots of blood, counted 11 tubes. Tim had his ECG - O'K. Echo was done last week. CT of his chest for his lungs and took x-rays of his sinus. The clown doctors paid Tim a visit and brought a smile to his face, just a bit of silly fun is just what the doctor ordered. Tim needed 4 units of platelets, 2 units of blood and albumin today. This will make him feel and look better. Thankyou to the Red Cross and all the blood donors out there. Zantac switched from orally to IV for better absorption. Blood detected in diarrhoea.
Tim had physio today and managed a short walk around the ward. Good to see him up and mobile. Little steps as we take one day at a time.
Christmas has arrived early this year - three enormous post packs arrived today at the RCH for the Viergever children from our friends at Applied Chemicals Clayton. It was a very unexpected and generous surprise. Kids will get to open them on Friday night. Soraya (our lovely nanny) will love you all too as the kids are getting a bit bored. Thank you VERY MUCH to the people involved in this.
Helen the occupational therapist spent time with Matthew and Tim this afternoon to explain in depth what leukaemia is using the help of a soft toy bone which opens up, a sponge (the bone marrow) and red blood cell, white blood cells, platelets, blasts (bad guys) and Mr Medicine Man (chemotherapy). This was a brilliant presentation, one I have never seen before, and the children were able to ask questions and discuss anything they were not sure about. Helen will drop back Monday and has offered to meet the other children and touch base with them as well.
Tonight we interviewed another nanny, Rebecca Lloyd who will start Sunday night as Philip has to go back to Melbourne for a few days next week. Our aim is to have Soraya and Rebecca support and care for the children while Philips working. Together they are able to work 24 hours a day (live in) 7 days a week if the need arises. We are covered and feel very fortunate to have 2 caring people helping us during this difficult time.
Friday Dec 13...day 14 Happy 7th Birthday Ryley Wood and Happy Birthday Brett Petrie!
Mouth ulcers and very sore mouth and throat this morning. Morphine increased to 2.5ml per hour. Will continue with mouth care and xylocaine. Today the children with Soraya are going to a Christmas Party Lunch with the Leukaemia Foundation. Matthew will leave the hospital reluctantly and return to family life at Camp Hill. The nurses thought Matt was becoming part of the furniture. Matt; Tim's room won't be the same without you, Thankyou for your care and support and invaluable help with the laptop. Tim's dirrhoea is not improving and it is going on too long so a gastroenterology consult has been requested. They are going to try Octreotide (somatostatin) IV and switch some of his oral medications to IV for better absorption. At the moment everything is passing through him and not taking much effect. He will also be having lipids (fat) to go with the TPN. This will entail Tim having lots of drugs IV and his port will not be able to handle the volume or some mix. So a triple lumen temporary central line is being placed on the other side of his port site in his chest near his collarbone. This is done under general anesthetic in theatre. Platelets are required again today prior to this procedure.Had a meeting with Dr Kent Robertson and he outlined where Tim is - and the next few days are the waiting game. We are waiting to see if his marrow recovers with good cells. He has had a few blast cells in his blood up until two days ago. By Thursday these were not seen in his blood and today's test was still good - no blasts meaning the drugs have worked to this stage. Tim will be having marrow tests on Tuesday and that is what determines the next stage - if his marrow is recovering with good cells then he is off to transplant Friday 27th Dec. If leukaemia cells are still dominant then home to Melb.............and Xmas will forever be a sad time for us. Kent cannot tell how Tim will go and we are both very anxious and nervously awaiting the result on Wednesday PM.
My thanks to Roselyne of the Red Cross who sat with Tim while I drove Matthew to the house at Camp Hill. Thankyou for making the Christmas Tree and for singing French songs to Tim. Thankyou for your support and lovely note, it was much appreciated.
We would like to thank Les and Maud Kewley for leaving a game on our front door step for the children to play with Tim. Thank you for your gift and effort, we don't even know you and to all the other people who have sent us cards and good wishes from Norman Park Uniting Church, it is much appreciated. Thank you to The Leukaemia Foundation for the day you gave to the children and for their Santa Gift.
