Start of High Dose
Happy Valentine's Day (for yesterday)! Skye spent the day before baking cookies for his girlfriends, and mommy and daddy of course.
<img src="https://images.squarespace-cdn.com/content/v1/52f80273e4b0c80880f13246/1394059063575-BXP5XGZ426O6AVTN6D6T/IMG_3570.JPG" alt="In house baking at its best!" />
In house baking at its best!
<img src="https://images.squarespace-cdn.com/content/v1/52f80273e4b0c80880f13246/1394059132633-SDV52WRA0MPCHWQ3VVHE/IMG_3572.JPG" alt="The finished product - yum!" />
The finished product - yum!
I am not sure that I can say that Sally had a happy day, but such is life. Her day started at 1.30am when Skye vomited up his naso-gastric (NG) tube. The last update seems like a lifetime ago and so much has happened since. Skye recovered from his shingles and came home on Friday the 31st January with NG tube in place, making daily life a little more bearable from a feeding perspective. He quite likes the idea of more gadgetry. When he goes out he has to pack his rucksack which special compartments for each of the items, pump, food, spare tubes, holes for tubes to go through, taps in the tubes
to feed medicine through etc. Great fun! It is slightly complicated if he vomits, as the tubes come out of his mouth. It looks quite cool with it going into the nose and out of the mouth. Sally and Skye had hilarious conversation as to why the tube couldn't then be pulled out of his mouth, rather than feeding it back through his nose. The gist of it was that the pump, and stand would have to follow suit. Skye thought this incredibly funny as he imagined the pump and the stand being pulled through his nose and out of his mouth.
In the week and a half that Skye was at home he has attended school twice, which did wonders for his confidence. Unfortunately his daddy is not a very good role model in that he wears a tracksuit to school. Skye therefore, not used to seeing people in ties, insisted on having his tie on the outside of his jumper. Top button undone, shirt hanging out and tie outside of his jumper. Not quite what Sally and I had in mind! But the subject of lots of laughter - which is good!
<img src="https://images.squarespace-cdn.com/content/v1/52f80273e4b0c80880f13246/1395566550878-NAJB2E5IH6XHCWXV15GL/IMG_1781.jpg" alt="An improved look for School visit number two!" />
An improved look for School visit number two!
Skye has also taken to dancing again, and the two boys put on a fab show on Monday night, dancing to the 'Recycling Song'. I am sure you all know it. "Go recycling you're burning up the quarter mile, recycling, go recycling". At first there was a lot of head scratching trying to work out what the recycling song was that Jesse was asking for. And, of course, when Grease Lightning came on in Sally's car - the penny dropped, as Jesse shouted, "yes, this one, recycling song". Clearly well educated boys!
In between all of this we have had to sign consent forms for the next round of Chemo which started on Wednesday. Harrowing, when once again, the list of side effects is less than appealing. The worst of which is fatal toxicity. The Thiotepa effectively strips him out and then they start rebuilding with stem cells. Infuse the new cells too early and the drugs wipe them out, wait too long and he is too vulnerable. This along with potential organ failure, makes the current treatment a tricky one to get our heads around. He is in an isolation room, with an en suite, and has to bath 4 times a day to try and keep his skin clear of infection. Yesterday, his temperature spiked at 38.5 so we have lost the battle to infection already and he is now on antibiotics to assist recovery. Unfortunately the worst of it is still to come. Sally is being amazing as always. Thank you for all the input on the Charity name, we are in the final decision phase and have already built the website, which is almost ready to go live. Soon after that will come Twitter and Facebook. Thank you all for your ongoing support. Quick request from Sally - Skye has a Playstation 3 in his room but all the games are shooting and football and a little advanced. If anyone has any playstation 3 games appropriate for 4-5 yr olds (2nd hand) they would be gratefully received.