Day +363 Happy ‘re’ Birthday Jack! We feel incredibly lucky to have you! Apologies for the delay in blogging but my spare time has been taken up with Christmas present ordering when I can. I’m getting so excited and cant wait to see everyone. We have plans in place for all different eventualities if any situation comes up with Jack this Christmas so fingers crossed! Since my last blog, we’ve only had 4 bad episodes with Jack and luckily all have been manageable at home. He has been suffering with bad episodes of skin rashes, bad blisters, swelling and sickness. Jack has been itching and causing the sores to bleed which is not ideal with his low platelets either. The other concern when this happens is infection to the open wounds so we’re constantly changing dressing and keeping him clean as well as everything around him. Jacks cells will always need help and this week his red blood cells took a massive dive and Jack was rushed in to hospital for an emergency blood transfusion. I could tell something wasnt right as he kept falling down and then the classic signs of being pale and lethargic. He only had blood tests 2 days before which were fine so it worries me how drastic things can change for him in such a short space of time. We had a slightly worrying time in hospital where I don’t want to go into detail but I am so lucky I was by his side the whole time and know now what I have to know about Jack in these situations for all the care teams involved. Had I’d not been there todays post would be a different post entirely. Jack is starting to say more things now and is stringing words together (I will try and upload a separate video). He always says yes please mummy so its so hard when he constantly wants to go up and down on the stairs to play and he knows he cant but then stands at the bottom saying those 3 little words to me. GOSH have informed us that we are going to move back over to the immunology team as there is nothing more the BMT team can do to change Jacks cells apart from another full BMT at the moment. As Jack is classed with still having both conditions our plan going forward is going to be different to what we’d wished. We were hoping by now that our visits to GOSH would only be every 6 months and that we’d be having Jacks hickman lines removed, all the meds would have stopped apart from the penicillin and that Jack would be going to a play group and being out living a normal life. It’s not that way but it doesn’t matter as we have him with us and we will continue to live every single day as if it was our last no matter what happens. We are all together and we’ll happily take that. Our most recent visit to gosh was the ‘big annual’ post check up with visits to lots of different departments. Oliver and Sophia joined us to help with all Jacks appointments, he had his teeth checked, his heart, his belly, spleen and liver and also his lumps in his neck. We havent had all the results back yet so not sure on all the outcome but we did however have his engraftment checked. Unfortunately, it still hasnt moved apparently there is still 3 months more that something still might happen. I kind of just think they are just saying that to make us feel better but Ill happily eat my words if something does change. Jack has attended 2 of his Christmas outings and both were so close to not happening and had to literally leave it till the last minute to go. It’s safe to say though that Jack is not a fan of the ‘big man in the red suit’. To say he was petrified is possibly an understatement but everything else apart from that part he has loved. I think it was more to do with the fact that he was out walking around and seeing things he had never seen before. We still have a few more to hopefully attend which I cant wait to go to. It seems so strange taking him out somewhere thats not gosh or Southend hospital. We’d also like to say a HUGE THANK YOU to everyone who came to the Jacks journey ball. Even after the late arrival due to Jack being poorly we had an incredible time. The total for that night was a fantastic £2700! Definitely an annual event in the making! Thank you. The next big event is at Southend Rugby Club on the 3rd January with a big family fun day with lots of different stalls, bouncy castle, bbq, Live Music and the 1st outing of the ‘Jacks Journeyman’ Rugby Team! and much more including an Amazing Auction with some out of this World Items! All you need to do is just turn up and pay £8 on entry. Even though the transplant wasn’t the success we’d hoped for we’ll be celebrating and be thankful to all that have got us here to Jacks ‘re birthday’. The 13th December is a day I will never forget. HB - 11.2 WCC - 4.8 N - 2.8 L - 1.5 PL - 48 CRP - 12 Engraftment - 26%
Posted on: Thu, 11 Dec 2014 07:37:49 +0000