To be continued.....!!

Well we are back to Home Sweet Home, bitter sweet however it is. It's nice to be back with the boys and mom. We are very disappointed with the outcome of our trip but we will not be defeated and not give up. . I had my first dose of chemo Friday knowing it's not the true solution. The physical and emotional struggles continue. Thankyou all so much for your continued support, we appreciate everything that everyone family, friends, co-workers, congressmen and the press have done for us in order to fight our cause. This will be continued............................!

Down but not out!!!

We just got the news after being called to the Hospital that we have been randomised to the chemotherapy treatment and then stem cell if no stabilization of Shazzas scleroderma. Its not what we all hoped, even Dr Burt and his team felt pity for us, he seemed as saddened by the result as we were. All it means is we have to have up to six treatments of chemo with the first tomorrow. Shazzas suffering will continue a bit longer maybe the chemo will help for awhile. If the scleroderma gets worse we will be back straight away so preventing the complications of the disease taking more of a hold. The insurance funding for the stem cell is good up until feb 09 so it will hopefully occur without having to be extended or battled for again. Once in a lifetime is enough for anyone as the post traumatic stress takes its toll. Now I have to survive the mother in law for 2 months maybe fighting the insurance wasnt that bad!!! We will be back to get the treatment which will fix Shazzas knackered immune system and put an end to this roller coaster ride of emotional turmoil.

When Tomorrow Comes

Today has been better as we are coming to terms with finding out our treatment options tomorrow, with the Russian roulette of randomisation. Hopefully we will get clearance for launch now, otherwise we will be coming back later this year post chemotherapy, probably in August for the stem cell transplant then. We had a more productive meeting with Dr Burt and Kristen his coordinator today instead of the lively debates we have been having previously. Dr Burt is a pioneer who is the worlds best at this procedure he has the relevant knowledge, skills and experience to get Shazza back to her fighting best. Sharon had her skin score done by a rheumatologist to get her baseline value recorded, a slight drop in this in the coming months will be a marker for Sharon's return. We would like to thank all who have taken pity on the boys and Pat back in Phoenix and helped them out. Sue and Gille, Mark and Emily, Mary C, Cindy and Nigel, and Rochelle and Alex we appreciate your kind efforts.

All quiet on the Chicago Front!!

Hi everyone thankyou for all the birthday wishes, it is very kind of you all to be thinking of us here in the cold freezing weather which we are loving immensely! Well not a lot happening as we await for Thursday, "R" day to arrive, everything crossed for that day! We have been moaching around the city taking in the Museums and tasting the local Chicago style pizza both of which the boys would love, with as much enthusiasm as we can muster. I know your used to Craigs quips by now but even he's suffering writers block, so you'll have to put up with me!! Sorry!!
Thanks to everyone who's been helping out with Mom and the boys back home it is truly appreciated i know Mom appreciates all of your kindness!
Two things thus far that have come out of this, mom is getting used to using the computer even though she's scared of giving it a virus!! Just cover your nose when you sneeze is what we tell her!! and Craig has become interested in doing laundry!! who'd have thought it, look what happens when you have too much time on your hands!
We both are enjoying reading all your blogs, thankyou for your continued support.
Missing you all. Cheers!

Shazza`s Birthday

Its Shazza`s Birthday today and we wait patiently in the Hotel in Chicago more tests and Drs to see next week at the Northwestern to look forward to. Our hearts are in Arizona where we wish we were with the lads and Pat. Lets hope the treatment Shazza needs arrives before her next birthday as the stem cell funding is good until Feb 09. Thursday could be the best present ever. Thanks for all the Birthday messages on email and blog. Also Happy Birthday to Lisa Volz who is Shazza`s sclero twin her story can be found in the links opposite.

In Sickness and In Health

We met with Dr Burt today quite a somber event similar to giving birth but without the end result. We were hopping to avoid the randomisation due to the endorsement of the insurance and Sharon's condition progressively worsening. This isn`t going to be an option as we so hoped and we have a 50/50 chance of getting stem cell v chemo. The Russian roulette of randomisation will take place on Thursday 20th. If we get chemo we will receive the first dose on Friday and have 5 more monthly with tests of pulmonary function and skin scores. With no improvement or slight deterioration we will switch to the stem cell transplant during this period. If we get stem cell transplant on Thursday we will receive mobilisation in preparation for Sharon's stem cells being collected and receive the transplant at this time. Another hurdle on this most challenging ride to overcome before we get Shazza back to health.

Congratulations to Victoria

We had great news that Victoria has had her Insurance ruling over turned by an Independent Review by California State Health Care Reviewers. She will be flying out on the 24th March to start her stem cell treatment the same as Shazza. You can read Victorias story from the links on the Rt of the blog. Victoria has had to fight whilst being ill from scleroderma dealing with the stress of the disease as well as insurance frustrations. Each person chipping away makes way for others to follow our two courageous Lady's, so this treatment will be mainstream soon. Congratulations Victoria all the best from the porters.

I continue to enjoy my new role in entertaining the fellow waiting room people and staff some interesting characters you meet. Today Shazza had a Thallium redistribution scan it checks to make sure her blood supply to the old ticker is good. She passed the test and we will meet Dr Burt tomorrow to discuss the treatment a big day for us. We went to the hospital museum there were some old Gi scopes to which Shazza compared to the modern torture implements, she uses in various orifices at work.

We ended up walking and hobbling to the hospital as the Shuttle wasn`t too keen to fetch us today. I think yesterdays shenanigans may have had something to do with it or the 30 people petition of complaint!!!

Watching Sharon get in and out of Taxis is getting quite interesting due to her immobility and lack of leg room. Thinking of taking some butter and a can opener to help us. Found Target but the driver told us theres a supermarket round the corner from the hotel.
Thanks for supporting us on the blog and with the emails.

Strange Old Day

Its been a strange old day which started with the shuttle bus arriving early, it came while we were still in the shower, we dashed and hobbled as quick as we could too meet our awaiting carriage. The bus was full and we expected to be pelted by rotten tomatoes and walkers for keeping everyone waiting.
Sharon's 24 hour urine leaked in all the rushing around and we had to drain the plastic bag back into the container. Hope this doesn`t affect the results but I know it spoilt my sandwiches.
The big appointment of the day was with a Cardiologist Dr Gheorghiade he was a very chilled friendly but thorough Dr. Quite a rarity for a cardiologist, as they are usually type A personality's who don`t give you a minute to miss a beat before rushing off to the cath lab. He examined Sharon and her previous cardiac tests and gave us the green light to advance further. He paged Dr Burt and left so Sharon answered the return call much to everyones amusement. At least she didn`t say John C lincoln endo that would have been confusing. The weather has warmed up a fraction with some sunshine not running for the shorts yet.

Spreading our Wings in the Windy City

Well we have started to get out and about in Chicago in the vicinity of the Hotel. Chicago is like Birmingham England but with bigger sky scrapers and a rather large pond. We went to the bar at the top of the John Hanckock building 96 floors up, we didn`t have a drink as vertigo made our legs pretty shaky and Shazza was worried about her 24hour urine collection!!!!. The howling wind from the elevator as it opened was pretty off putting and the glass from floor to ceiling made the drops very impressive. The views were magnificent with the Sears tower in the fore ground, it was like the film Blade Runner without Harrison Ford. People stay out later here, people were walking around at 11pm at night (and they weren`t homeless)the city is very vibrant. Well today Sharon had a chest Ct for breakfast, Dental check for lunch and a look at her veins for afternoon tea. The hospital continues to excel and we didn`t have to wait for anything its so slick its frightening. Tara Tara, The porters

Well we arrived at last

The bags beat us here into O`Hare airport but our trip took a few unanticipated turns before we arrived. We missed quite a few flights trying to fly standby due to spring breakers and weekend travellers. We eventually arrived into Chicago Midway at 1am on Southwest Airlines on a direct flight we purchased. We checked into the Senecca Hotel which is very close to the Northwestern into a large Hotel Suite separate kitchen, large livin room and bedroom. This will be home for awhile not to0 bad quite comfortable, just around the corner from our new neighbour Oprah. The hotel is quite quaint old Victorian type it reminds me of stopping at my nan`s as a kid. Sharon made her pulmonary function study at 8am, Had bloods 15 tubes one arm full taken, Ekg and went and had an Echo done. The Hospital is very efficient, serene and instills confidence where ever you go. We met with Dr Burts Coordinator Kristin, who is very approachable and informative who took the time to find us and explain our itinerary. After our Hospital soiree we went to O hare airport and located our belongings its great to clean your teeth at last.

Short trip

Didn`t think we would be home so soon. Don`t worry we are still going. Sue and Gilles kindly took us to the airport and we checked in great. Flying standby on a weekend with spring breakers has proved more difficult than expected, all direct flights to Chicago are full and over booked. So instead of waiting around all day Alex the Pilot came to our rescue and picked us up from the airport and we shall be travelling via Las Vegas arriving 5am Chicago time tomorrow morning. Thanks for all the kind messages.

Americans

Well today we become Americans we have our ceremony of citizenship. We have travelled far on our journey from the Midlands to when we arrived in 99 and made Phoenix our new home. Lets hope our adventures continue with the treatment in Chicago going well in restoring Shazza to health.

Sharon the News Star

Channel 12 News filmed Sharon at work highlighting the condition and treatment it aired at 10pm on Thursday 6th March. Lets hope this rare condition and Sharons Story helps others get the treatment they so need.

Now we are bloggers

Well, we never thought we would have a blog well thanks to lisa shazzas sclero twin a computer wiz. Cheers Lisa, time to start blogging Eh!! We'll keep you up to date with our adventures!! Just awaiting mom to get here from the UK to introduce her to the ways of life in the US before we embark on our Chicago adventures!! We would love to here from you guys in the US and UK . We would like to thank you all for your continued help and support. Thankyou so much from the bottom of our hearts.