Day + 384 sitting on cloud 9! Whoopee! Jack remained well enough over the Christmas period to be able to enjoy everyday with family and friends! We have had the most amazing time and want to thank everyone so much for making it the best Christmas to date! We were all truly spoilt and Jack still has presents to open!?! Wed also like to personally thank those of you at Hood Group for the kids gifts! It totally blew us away. Thank you so so much! Jack was able to meet my Auntys son over Christmas who is 5 months younger than Jack. It was lovely to finally see them together (even if Jack was very nervous and didnt know how to interact at all!? Ha ha ha). It made me realise just how much I need to take the next step and break some of the isolation rules so Jack can work on his people skills. Its going to be very difficult to manage but I want him to try and have some kind of fun outside of the home and enjoy some controlled interactions. If you do see us out and we do need to leave or move away please dont think we are being rude. Tomorrow is going to be an incredible day at Southend Rugby Club and I am very much looking forward to going. I will also (touch wood) be bringing Jack for a short time inside his little bubble. The 7th is jacks next meeting at gosh where he will see the dermatology team and our consultant meeting for the next steps. Were also fitting for a saftey helmet. I am very excited about this meeting as well be back with the old team who will hopefully have a better plan to whats best for Jack. People have been asking me what Jacks conditions do to the body and why are cancers mentioned with them. So here goes... Wiskott Aldrich Syndrome presents itself differently in most cases to varying degrees (some WAS patients may have 1 or 2 out of the 5), Jacks has 4 out of 5 of the conditions components. *Thrombocytopenia - Petechiae rash (low platelet count unable to clot) immature and miss shaped platelets are released from the bone marrow (unable to function) and are destroyed quicker by his spleen. *Infection - Recurring infection due to not having antibody functions meaning his bodies cells do not work. It doesnt recognise illness, deal with the illness, remembers the illness or gets rid of the illness. *Eczema - Reason for eczema is Jacks body sees his skin as a foreign body due to his cells malfunctions. *Auto immune - This is where the body malfunctions and starts to attack its own body. This is present in Jack with extreme inflammation affecting the tissue, muscles, heart, brain or other internal organs, also high fevers in the absence of infection. *Malignancy - Due to Jacks current body cell structure he has a strong chance of developing Lymphoma and/or Leukaemia of the cancers common for WAS children. Jacks other condition is Familial Mediterranean Fever (FMF) and the effects on Jack are... Atherities - joint pain Myalgia - muscle pain Inflammation - internally organs and external body parts Chest attacks - trouble breathing laying flat Vasculitis - skin lesions and rashes Fever - without explanation Jacks cells dont work correctly and are already immature when released from the bone marrow. The number released is a much lower than it should be. When you have a cancer your cells are released at an uncontrollable rate and dont die off correctly causing the body to go into over drive which then damages tissues causing tumours in the blood. Theres over 200 different types of cancer and there is no 1 reason to any why it happens. Thats the easiest way I can explain Jacks conditions and hope that makes? We want to wish Everyone a very Happy New Year and look forward to seeing many of you tomorrow xx HB - 10.8 WCC - 3.6 N - 1.6 L - 1.6 Pl - 44 CRP - 36 ESR - 9 ALT - 68
Posted on: Fri, 02 Jan 2015 21:16:21 +0000
Trending Topics
Recently Viewed Topics
© 2015