Quality Time!

Hiya all, well we had lovely family christmas very quiet but just what the Dr ordered! My white cell counts continued to climb and touch wood thus far no infections!! We have all been under preventing infection precautions which are lessening as the weeks go by we have even started to eat out a little.
At the moment i am not working as i exhausted all my sick leave, i am using this time to recuperate, i am hoping to return to work part time sometime in the near future. I am spending my time going to hand therapy, cooking and spending quality time with all of my Boys!!
My hair growth is slow but sure, it has not been too bad wearing scarves they certainly keep your head warm in the winter. What winter i hear you guys cry in the UK but it gets cold to us here when its winter and in the fifties.Brrr! I can walk around the house without frightening the boys if i don't have a scarf on, Craig says i have Sinead O'connor look but it's not quite long enough to not wear anything outside of the house.
I met with Lisa my sclero twin who is doing really well, she's had quite the battle but has the strength and determination to recover from her complications, what a trooper!! She said to me that Dr Burt has saved her life she's going to get stronger and stronger! My sentiments exactly.
My mom comes back out in March with my sister and niece to see that i am doing ok and help celebrate my 40th birthday, oh my gosh!! I am looking forward to seeing them don't know how Craig will cope with four women in the house!
See ya Shaz x

Home For Christmas!

Yes! We are home, it was with some relief that i was finally given the OK to come home by Dr Burt, although my white count is not quite where they like it to be as it is still 2.1 and cannot start an antibiotic that i will need to take for 6 months until my counts are at 3. So technically i have to be careful of infection.
It was great to see the boys and give them a big hug and Craig's mom and dad, who did a great job taking over where mom left off. It is so nice to back home, you certainly miss all the home comforts. It's also great not being a patient and getting some normalcy back although we are being hyper vigilant about germs. I don't think Kieran and Aaron have washed there hands so much. Craig's parents are being super cautious and letting me have plenty of rest, Bless them!
We are looking forward to a very quite Christmas eating plenty of good food and having some quality family time.
Thank you all for reading the blog and for all your support on this road to better health.
We would like to wish everyone a Merry Christmas and a Happy and Healthy New Year!
Cheers Sharon and Craig

Aaron`s Birthday

Aaron is 11 today and he want`s us home and we wish we were there. We continue to tread water at the hotel near the Northwestern. Sharon`s white cell count yesterday was 1.7 with her neutrophiles just above neutropenic level. We had to go to the hospital for stat labs this morning as they were considering readmitting Sharon back to the BMT unit. The count was 2.1 today but they won`t take the line out. We have to go again tomorrow and see what they are and what happens next?

Freedom!!!

Freedom!!! The day has come Day 20 of hospitalization and Day 15 post transplant and Sharon has the all clear for discharge to the hotel and get out of the Bone Marrow Transplant Unit. The central line needs to remain as it’s a tunneled catheter and the platelets are not high enough at present to remove it. The white cell count yesterday was 1.3 but today its 12.2 what a response. We visited the Hospital Chapel yesterday and asked for some divine assistance something helped. Sharon says she is,"Looking forward to breathing some cold fresh Chicago air and embracing Craig’s cooking". Hope her new immune systems up to it !!
Craig's parents arrived from England yesterday in Phoenix to relieve Pat Sharon's Mom of her duties looking after the boys.

Thanks for your support

Craig and Sharon

All Quiet on the White Cell Front

Hiya,
Day 13 post transplant and 18 of Hospitalisation but whose counting when you are having fun ! There was a possibility of maybe getting out of the Bone Marrow Transplant Unit but my white cell count dropped from 2 yesterday to 1.4 but they are engrafting at last but my platelets are still 35 and low so it has been postponed for now. For the first time Dr Burt has allowed me to visit the cafeteria with a mask on. Craig suggests I cut a hole for a straw to go through it so I can enjoy a beverage. We had a lesson today about diet and foods post transplant with others from the unit. Sandy who is post transplant with scleroderma is feeling alot better today so thats good news.
My appetite is great and I feel stronger. Looking forward to returning to Craig's bachelor pad at the hotel eventually and cramping his style.
All the best Sharon and Craig

Almost There.

Hiya,
Today is day 11 post transplant my white cell count for the first time is coming up more substantially they are 1.4 on there way to the 4.5 we need, Dr Bucha who takes care of me when Dr Burt's not around says they are very elegant in there arrival like ballet dancers slow but perfect. I have finally been disconnected from my continuous IV. Most of my meds can now be given orally it's so nice to be free with out being tethered. I still have the central line so they can draw the daily labs and give blood products as needed.

We would like to thank Caroline for taking mom and the boys to the Desert Botanical Gardens which they enjoyed immensely, also Mary C who kindly took them to the zoo lights which again they all enjoyed, however Mary did not get Aaron home before his bed time!! Thank you so much it gave them something to look forward to and definitely broke up the long days. Thanks also to Mark and Emily who took mom out and always called to see if mom needed anything and we cannot forget Sue and Gilles who took mom shopping and have always been there for us.Thanks to Nigel who fixed Kieran's bike for him so he did not have to walk to school. You guys have all been fantastic knowing that Mom and the Boys are ok makes it easier for us to be so far away. Last but not least we would like to thank mom who has been wonderful with the boys and has run the household better if not more efficiently and economically better than me. Your a gem we couldn't have done it without you.

Next week Craig's parents arrive there will be an exchange of the baton and they will take over when mom returns to the UK. Everyone is looking forward to her return only so they can go round for a good Sunday lunch!!

Our thoughts and prayers go out to Sandy who is at the same stage we are at and is not feeling so well today.

I am slowly getting used to being bald and now I am free of bad hair days!! We still await more white cells to arrive so I'll be out of the neutropenic range. We continue to be cautious another weekend in hospital watching the brutal Chicago weather from the 15th Floor window, I'm actually not envious of being out in that weather.

Finally I would like to thank Craig for his ever loving support and care. He has been truly fantastic from the time I got diagnosed with scleroderma, he has been instrumental in the treatment that I have received and supporting me, my advocate and loving husband although he still won't even give me a peck on the cheek because of germs!

Shazza x x x

Hair Today Gone Tomorrow

Hi,
Day 9 is here and the white cell count is at 0.2 up from 0.1 a move in the right direction but a long way from where we need to be safe. Dr Burt checked under the microscope blood smears and they showed white cells too immature to count. They are developing and our immanent arrival of the new immune system is in site.

Finally today couldn’t stand the hair issue any longer as it was getting annoying as it was falling out in clumps and getting everywhere and itching so bad. The Donald Trump comb over has been replaced by the Sinead o Conner look. With the platelet counts being so low shaving was out the question so Craig cut it with scissors and then trimmed the rest with clippers. It feels much better now and my collection of hats will be put to full use.

Awaiting an Imminent Arrival

We had high hopes for today but I guess giving birth to a new immune system can vary from person to person. Sharon’s white cell count is still 0.1 and no neutophils so we continue with the isolation and hand washing. Still no fevers or signs of infection touch wood. It feels like scatting on ice each day getting nearer to the edge of the pond, where you can be safe and worrying any minute the ice could break and you are going to have issues. On the menu today we have blood ordered to rectify a low hemoglobin and an infusion of platelets to get this clotting factor up. Sharon feels great and is being very patient.
Thanks for your support
Craig and Sharon

Snowy Chicago and Steve Wrights Sunday Love Songs

Hi,
Sharon has got over her hangover side effects from her exploits yesterday, No rapid response calls warranted. We are listening to Steve Wright Sunday Love Song's on BBC radio 2 over the Internet. Sharon insists I`m held captive in the isolation room being tortured by Spandau Ballets little love ditty's. The nurses seem to enjoy it having a little bop along. Seems I have been promoted to patient Care tech we only have a RN today we usually have a PCT as well, so I made the bed, cleaned the room, taped up her dressing to her central line so Sharon could shower and done one set of vitals. I wonder if they will give me a password for the computer so I can chart them, they use the same cerner charting that we use at Good Sam. Must ask about that?

The snow has arrived and is obscuring the view of lake Michigan might have to steal Sharon's heated gloves to avoid loosing an extremity on the way back to the hotel. Quite novel really not much Snow in Arizona just a blue sky. Boredom is a good thing so says Dr Burt but I wonder if he knows about Steve Wrights Sunday Love Songs, awaiting the birth of more white cells now we are doing the neupagean shots again. Can`t help thinking of that Kevin Costner film field of dreams build it and they will come, hope they hurry up!!

Some one asked me to explain the blood counts we are looking at ,this should fill a little time.

He draws labs daily unless we have a fever or other abnormality.
The labs that are drawn every day are a renal panel CMP which monitors electrolytes like potassium and magnesium these are replaced as needed. The other lab is a CBC or complete blood panel which monitors the red, white and platelets cells. A hemoglobin part of the red cells are checked for anemia a number above 9 is good we dropped once down to 7.8 and she had two units of blood which are specially treated. Sharon’s platelets are low a normal count is above 100 this is normal post transplant these deal with clotting Sharon is careful when brushing her teeth these have yet to need replacing. The white cells which fight infection are counted as part of the CBC a normal white cell count is 4.5 -10 , 4500-10,000 white blood cells/mcL (cells per microliter) Sharon's count today is 0.1, Neutropenia is when the neutrophil or the white cells that eat infection are below 2000. Sharon’s are too low to count so you have to be a germ a phoebe and wash your hands all the time. so there you are!

The Northwestern has a reverse air system for the whole floor as well as individual rooms usually most BMT units have only individual room and you are isolated more we get to escape for walks three times a day. When you enter the department you come through it seems an air lock with two sets of doors neither will open without the other being closed first. It’s like a scene from 2001 a space odyssey without the space suit and mad computer, you get gloves and mask instead. The doors malfunctioned yesterday and I spent a pleasant 10 minutes with the cleaner discussing the merits of a clean environment. The doors eventually reset themselves maybe there is a faulty computer and was released unharmed in to the wide open world , thankfully not outer space.

Sharon’s doing well today no fevers and her appetite is coming back and she is feeling a little stronger. We keep marveling at the visible changes to her skin and the simple things she can now do that were difficult before. Enjoy the silence by Depeche mode things are looking up no more Whitney please Steve.
All the best Craig and Sharon

4 Days and Counting

Hi guys,
Thanks for your kind thoughts another day towards a brighter future. I am already seeing some changes 4 days post transplant. Most noticeably the skin on my hands has started to soften , I can see wrinkles where it was taut before and my fingers are now able to extend further. I think a similar thing is happening to my face as I have a different sensation to my cheeks. The Occupational Terrorist/ therapist is working hard on my range of motion and the looser skin is wonderful to see. My leg swelling has vanished and seeing normal ankles for the first time in a long while. My breathing feels ok. My white cell count is 0.4 with no fevers I start neupagen shots again tomorrow to get the new immune system working quicker.

Last Night was a bit eventful . It was late and Craig had left for the night when I experienced a strange sensation my heart was racing with chest tightness and I felt really weird my ears and jaw were doing strange things. I called the nurse and Craig at home and told them in a panic something was happening. Craig left his cooking and rushed back to the hospital. Craig started doing the vitals on the auto matic bp machine and assessing what was going on and the nurse paged the doctor. I thought I was doomed and the nurse brought me some ativan after speaking with the Doctor. Craig thought it was some kind of drug reaction and worked out it was the side effects from the anti emetic marinol after he googled it. It is used post chemotherapy and is made up from a derivative of marijuana. Apparently this is what its like to be stoned they stopped it this morning and I still feel a little off today.
Thanks for all your well wishes Sharon and Craig

Long Days of Isolation

Hope everyone had a good thanksgiving thanks to Sue and Gille for helping Mom and the Boys participate in the holiday festivities. We felt apart of it as we could see and talk to them on the web cams on our lap top from the hospital isolation room.

Well I am still Neutropenic which means I am susceptible to infection but each day is getting easier my glands have gone down and the nausea is easing with the new anti emetic and have started eating more. Generalised weakness and lethargy is an issue but I am still allowed to walk with a mask and gloves three times a day in circuits around the BMT unit. Another patient coughed when we were walking and we both held our breath and walked in the opposite direction as fast as we could manage. We both have a germ paranoia cleaning the room down regularly with sani wipes and constantly washing our hands. The days are long but try and keep busy and prevent the boredom from becoming too much.
Cheers Sharon and Craig

Blast Off

Well I got my stem cells back all cleansed and revitalised and can now focus on getting my strength back and recovering. The risk of infection is most heightened over the next few days. Dr Testorie was there and a collection of nurses and made it a special occasion for me as they treat it like a birthday. They gave me a bag with goodies and a card signed by the nurses all that was missing was a cake don`t know if its on the special diet plan. My blood counts are what is expected at the moment but my glands in my neck are up and nausea is an issue. They are switching the anti biotics round and the anti emetics. Craig is keeping a close eye on proceedings and the phone calls and messages help.
All the best Sharon and Craig

Awaiting lift off

Well tomorrow is day zero the day I get back my scleroderma free stem cells and let them loose to build my new immune system and a brighter future. My haemoglobin was low from all the chemotherapy and I received some blood to top me up. The chemo finished yesterday and I have the last immunoglobulin infusion going otherwise known as the rabbit. It was great to get rid of the catheter and irrigation today and this has helped with walking don`t feel like hopping around like a rabbit just yet. The BMT unit at the northwestern is one of the few units in America to have a reverse air system not just in your room but the whole Bone Marrow Transplant floor. This allows you to be free to walk with a mask which helps keep the old bellows going and the madness of solitary confinement at bay. Craig and the phone calls also help break up the monotony of the long days.

The 15th floor of the Northwestern yields me a striking view of lake Michigan, John Hancock Tower and Oprah's penthouse in the water tower seeing the mist this morning covering the sky scrapers was very different to the vistas of Arizona. At night Craig says it looks like a scene from the Blade Runner movie.

Well another day completed awaiting tomorrow and my new start to better health. My early Christmas present from Dr Burt arrives in the form of my stem cells tomorrow. I would give him a big hug but cannot due to isolation precautions. Even Craig won`t give me a peck on the cheek in case of bugs that's being a nurse for you..

Thanks for all the well wishes concerns and prayers.
Love Sharon and Craig

Return to the Windy City

We arrived back on Wednesday after our fleeting visit back to Phoenix. We had a great time catching up with the boys and getting things ready for Christmas as we don`t know what issues may lay ahead. Mom has been doing a great job and our friends have been fantastic. Especially Sue and Gille, Mark and Emily. Thank you all for helping out. The boys are more used to Moms routine than mine. She has it well organised.

After our short but sweet visit we boarded our carriage back to Chicago and returned to our new second home at the Northwestern. Winter has come to Chicago while we have been away and the icy chill is more noticeable. We returned this time with more apprehension and trepidation for what may lay in store for us over these perilous few weeks. I now have a new line in my rt jugular a tunneled catheter and get anti coagulation to stop the clotting problem that hindered my previous access.

The bone marrow transplant unit for the last three days is now home for me. Craig is staying at the Seneca hotel nearby at night. The unit is excellent with large individual rooms with all mod cons. The nurses and doctors are exceptional taking care of all my needs. You can instantly call your nurse on an individual cell phone a RN as well as an auxiliary. Chemotherapy is going to plan and I am tolerating it well so far. Craig cleans the room from top too bottom with each visit with the hospital sani wipes that kill everything from the plague to the common cold and is becoming a germ a Phoebe. Hope he takes these tasks back to phoenix with him.

I have a further two days of chemotherapy along with an immune globulin immunosuppresent agent called a rabbit. It helps the body accept the transplanted stem cells not a product of watership down. Today is day minus 3 and day 0 will be the day, I get my scleroderma free stem cells back. Which will make my new immune system by in grafting to my bone marrow.

Dr Testorie one of my immunologists who is originally from Italy an Ac Milan fan was telling us about the successfully treated patients he has seen receive the stem cell transplant. There was a young girl who after 18 months of scleroderma ended up bed bound with extensive contracturs. This girl is now walking and able to once again look after her self. He told us that the skin is the first improvement to be seen which is great news for me and the lungs quickly follow. People on oxygen now are off it which is remarkable. The success rate is amazing which gives us great hope for the future.

We thank you all for your continued support.
Craig and Sharon

Harvesting.

Hooray!!!
We get to fly back tomorrow and we can't wait. Why so happy? Well the last 3 weeks have seemed like an endless journey of tests and investigations with a few bumps thrown in to make it not quite the smooth journey we had hoped for, but we are halfway there to better health!!

Following the mobilisation and neupogen shots I had to go to my favorite department Interventional Radiology to have a line placed so my stem cells could be collected or harvested. No combine involved!! The Dr's remember me because of my interesting challenging vascular system and I remember them for the endless poking and prodding. This procedure is now placed towards my top ten of least favorite things to participate in willingly. I knew it was going to be a difficult day when the fluoro machine went down just as I was lying with trepidation on the table waiting for the fun and games to begin. I had to return to the holding area to extend the torture further and wait another hour or so, it reminded me of times in Endo when we have been ready and just before we start the computer crashes, how frustrating!! Anyway 2hrs later after being choked, stuck and prodded the line which feels like a hose pipe is safely sutured into my neck, I know its a slight exaggeration but that's what it felt like and off we trot relieved but forlorn to the blood center .

We have thought so hard to get to this special day but I really wanted to have enough stem cells harvested in one go so the hose could come out without clotting like the picc line had and save a return visit for the next day and a second collection. With my history of clotting we really didn't want the line left in longer than necessary and the docs were in agreement with this. We arrived at he blood center the nurse eventually took some blood moaned about the time of day and sent us off to the cafeteria to await the results.

On returning she seemed doubtful about being able to do the procedure in a timely manner argued with biochemistry about a lost specimen for another half an hour then realised the results were in the computer she just couldn`t see them and the results would probably be inadequate so wouldn`t be priming her machine until she discussed it with the Docs. Eventually she got my consent spoke with high command got the go ahead much to her dismay she primed her machine. We tried to explain the clotting issue with her and she dismissed us as paranoid nurses but at least she put some heparin in my line after we insisted and started to wash her hands which she hadn`t done before. So I spent the afternoon getting hooked up with the apherisis machine and over 4hours my stem cells were collected. Under the watchful eye of Craig and of course the blood center nurse.

It's hard as nurses when your the patient to switch off that role as you want things to be done to your standard not slap dash, the nurse did not instill confidence in us which put us on our guard. You get good and bad in all jobs but when your life's on the line you expect a standard of professionalism with the knowledge skills and experience to go with it. Everyone so far up to this point at the northwestern had been exemplary. Craig put his Nursing Sisters hat on told her a few times what was what especially when she left the blood clotting in the access port for ten minutes on rinseback. Injecting it without aspirating wasn`t going to happen. Lines draped on the floor was another beauty and whispering about us in hearing range to other nursing staff made for a stressful afternoon. The other staff seemed to dislike her as much as we did.

Harvesting went well as I survived and the stress was worth it as fortunately they got 5 million stem cells and apparently they only needed 2million, so we returned to the blood center to have the hose pipe removed . Nurse cratchet had bailed on us and talked the Drs into pulling it much to all are relief. The line was as unpleasant going in as coming out there was a lot of resistance, I had visions of the doc putting his feet on my shoulders to pull it out but he didn't need to.

We are so glad that we are now past the worst part so we have been told. We return to the hospital November 20th when I will be admitted for about 2 weeks for the stem cell transplant. We fly out tomorrow and are going to relish the time with the boys and mom and enjoy the break from hospital trips.

Thank you to everyone for all your help with mom and the boys and for all your well wishes. Thanks for taking the time to read the blog of Sharon and Craig's adventures and the quest for better health.
Love Sharon and Craig

A Bumpy Road.

Hiya,
Well I did get admitted for my mobilization chemotherapy, the hospital is new and very very nice, the nurse gave me a guided tour of the room, I was shocked it sounded more like a hotel than a hospital room with a flat screen plasma tv with a keyboard and Internet access. When you are hungry you just call and receive room service. Craig wanted to stay the night to try out the facilities. The hospital is that popular there is a waiting list for the obs/gyn floor so people can deliver there baby's there. We were also impressed that our Dr's when they entered my room washed there hands and Disinfected there stethoscopes every time without prompting from infection control!!! The Chemo went well as it was a bigger dose than I have had before and had to have bladder irrigation!! which was a new experience but at least I didn`t have to struggle drinking as much water as previously. I had very minimal nausea and I was discharged back to the hotel the next day. The weekend went better than I was expecting.

On Monday the nurse came to flush my Picc and deliver supplies for its care. She skipped the training when she realised we were both Rn's. As the day progressed my arm started to feel tight, painful and my fingers to my left hand became discoloured. I wanted to leave it to the next morning and see what happened, I asked Craig what he thought Straight away he said lets call the Dr and pull it out . On speaking with the Dr he advised that we go to the ER to have the picc pulled and get a scan. So off we trotted to the ER immediately got triaged as high priority and was taken back into the ER. The Dr's decided to pull the picc and admit me and to have a scan in the morning.

Two hours after arriving in the ER I was in a hospital bed very efficient service. I was admitted to the old part of the hospital not where I was previously. Where's the plasma TV with Internet and room service , there goes our ideas of grandeur , the bed in the room had a air mattress with a noisy leaking pipe on it that was very noisy. Craig said your not going to get a great nights sleep on that thing, hence he wasn't so keen to stay the night here!! So the next day bright and early I was whisked down to the Vascular Lab where they diagnosed a DVT from my axilla into the subclavian. Oh great I thought now I'm going to be on blood thinners with a low platelet count from the chemo but not so, Dr Burt assured me, that this clot will just disperse without such need. So a small bump in the road, it's very humbling being the patient and not the nurse but I must say the care I have received thus far has been excellent.

So now I am back at the hotel with my own private nurse Craig who works for food, is now having to give me s/c neupogen shots. These are a breeze after all the IV pokes I've been used to. I have to do these for 7 days as they will increase the amount of stem cells I produce. With the shots I also receive oral antibiotics until Monday. This is when I go in for the Harvesting of the stem cells, which unfortunately means another line being put in but thankfully not another PICC . Not looking forward to that day!

It's getting a little nippy here so we are looking forward to returning to AZ for 2 weeks to get warm probably around the 4th November, can't wait to see the boys and sleep in our own bed. I have not lost my hair yet but will do over the next week, at least we will save on the hair care products.
Thanks for reading the blog, wishing everyone well,
Love Sharon and Craig.

Cleared for Launch!!!!

Hi everyone,
I got the clearance for the stem cell transplant all the tests are in and here we go! Well today I get admitted for overnight chemotherapy called mobilization which encourages stem cells from my bone marrow to enter my bloodstream for collection, at present I am awaiting for a bed to become available.
Well I finally have the picc line I was looking forward to getting as this would prevent the numerous peripheral IV pokes and make the IV chemo easier to tolerate, after two attempts it was somewhat concerning to find my intra vascular circulation is just as problematic as I have a stenosis to my Rt subclavian vein thus they could not thread a picc line through that side and had to place it in my left arm, Four hours later thankfully it was placed successfully. I am now finding out through these tests that scleroderma has been affecting my vascular system more than we realised. Most of my heart tests have checked out fine but upon meeting with the cardiologist, it became apparent that I had some ischemia in one test which is often seen with scleroderma but I have been assured by the cardiologist and Craig that there is nothing to worry about!!! It would be my luck after finally going in for stem cell treatment and end up getting a bypass instead. It has taken a few days to come to terms with this but I say to myself that this is the reason I am having this treatment, to restore my immune system and alter the course of the disease, We will get through this by staying positive, strong and not letting these findings worry us.
Craig and I ventured out from the "miracle mile" area as we were having Walmart withdrawal symptoms. Everything is so expensive here designer this and that, so we took a bus to the nearest Walmart. Which after an hours bus ride we found it to be in a decidedly dodgy area of Chicago, we felt like staying on the bus and heading back to the safer part of town. However we hid our jewelry tried to look less conspicuous which with Craig is very difficult to achieve but we persevered and survived and got our "Walmart Fix".
One thing about Chicago you can definitely get around it with a great public transport system. With all the walking we've been doing its great for my cardiovascular system so Craig's keeps telling me.
As we await for the phone call on my restored state of the art mobile with new sim card to say my rooms ready for my overnight stay. I think of the positive at least Craig gets a night off from my snoring!!
Anyway Love to all our Boys, Family, friends in the US & UK, All at DV Endo & all at Good Samaritan Kidney Center. Thanks for all your concerns and well wishes and helping out back home with mom and the lads.
Cheers Sharon and Craig. x x

A Bruising 1st Week

Hi everyone,
Well I have week 1 under my belt or should I say tourniquet and I must admit that being on the other side of the health care fence is certainly different. I am actually excited to be having a picc line placed due to so many IV pokes, of which some that were not so successful, the options are getting slimmer, even Count Dracula would suffer getting blood from me. I've had lots of tests to check out my heart MRI's , Angiograms, Stress Tests and I think at the moment there all checking out ok. We met with Dr Burt this week who assured me that the stem cell transplant would go ahead. Phew!! Definitely one less thing for us to worry about or should I say Craig to worry about.
This weekend will be pleasant as we have no hospital trips and my arms and hands can heal. What else has happened? Well I lost my phone and subsequently acquired it from the lost and found, here I was thinking yes there are still honest people in this world, alas when I switched my phone on they had taken the sim card out. I can hear my sister laughing at this, as my phone obviously was not worth keeping. If you need to get hold of us you can contact us through Craig's cell or our home phone.
Chicago has been kind so far to us as the weather hasn`t been too bad we have managed to be able to get around without frost bite and have even taken some strolls along the lake. The change of pace to our normal lives in Phoenix is becoming less of a struggle even Craig's found time to read a book. Need to get him to sit down longer with his visits to Starbucks and we will be well away.
The boys back home are doing fine, Mom is doing a grand job! We get to talk everyday via web cam so we can continue to nag them on hygiene and homework needs. We are missing them greatly but know that we get to see them in November for a short break before returning, which we are looking forward to. My Mom gets to go trick & treating with the boys which is a first for her she's threatening to go out in a witches hat and no teeth!! Craig says she dosn`t need a costume look out neighborhood!! Love Ya mom!!
Well better go we need to find a local Best Buy to get my high tech phone sorted.
Love to all. Sharon and Craig

Back by popular demand!!

Hi guys, I hate to go over the same old same old and would hate to bore you with the tedious details of tests, tests and more tests but I'm going to!!No, Just kidding! At least this time i know my endeavours will get an end result worthy of the cause, the stem cell transplant.
Well Chicago has been kind to us in climate terms, the weather is warm actually on Monday it was warmer than Phoenix but there is news of rain, looks like I've got to go out and buy a brolly!!!I know that's nothing new to you guys in the UK but we are used to them shielding us from the sun not rain! Craig's happy because he still gets to wear his shorts at least for the time being.
I see Dr Burt tomorrow so i hope the visit goes well. Fingers crossed.
Thank you to everyone who are supporting us in this, it means a lot to me that I am being nagged to write this blog because you care!
Cheers Sharon and Craig.

Long time no hear!!

Hi everyone,
Its amazing how time flies when your having chemo!! I had my sixth dose

of chemo last week in Chicago, it turned out to be a very enjoyable week in many ways. Firstly I met up with Dr Burt and Kristin and they were pleasantly surprised by how well I am and look, Yes, astonishingly Chemo / Steroids have helped greatly, following March I had some quality time with my mom, which was great, she looked after us all very well. Thanks mum!!!!! I began physical therapy 3 x a week to help with my legs and hand therapy so I utilized my time off work by having rest coupled with therapy. My mobility greatly improved and my strength came back, Kieran would say don't mess with mom she's on steroids!! I actually did not realize how bad I was until I started to feel better, little things like walking from my bedroom to the living room did not feel like I had done a marathon anymore!!
Mom left at the end of May and I returned to work in June something that I did not think I'd be doing. Craig "my rock" started to sleep a little better as he saw me improving and not struggling, I realize that it was hard for him to see me like that, but he continues to be supportive and loving husband. Thanks Craig. xxx
I digress, oh yes we went to Chicago to have my sixth dose of chemo! yuk!! We took the boys with us they enjoyed visiting the city, Chicago certainly comes to life in the summer!! wow its totally different than the winter, now we know why people live there. We did sightseeing scaled the Sears tower by elevator definitely not for those with a fear of heights, Aaron enjoyed swimming in Lake Michigan and the long walks around the city, we also did the double decker bus tours and museum's and of course threw in a couple of hospital visits. Dr Burt was pleased with how I looked and how some test results came out and he gave me some hope for the stem cell treatment as I do not have to meet markers based on deterioration as was first thought ,he expressed that now I have completed the chemo any deterioration in my condition would lead to crossover to stem cell transplant!!! wow was this was music to our ears, we are so overjoyed that I do not have to get so bad to get the treatment I need. Chemo is managing me symptomatically but has it cured me, no, Stem Cell is my cure!! So the trip to Chicago went well !!
Thank you to everyone for your kind wishes and concerns, also thanks to everyone in the UK who contributed to support shazza across the pond, Deb, Wendy, Angie, Thank you so much for your time and effort, I am very appreciative of your continued fantastic support. Cheers !!!
I promise to be a better blogger or even get Craig to blog more often.
A last note to Lisa and Victoria who had stem cell transplant ,continued well wishes to both of them they both have had there struggles it has not been easy but they are both on the way to recovery, I admire there strength and determination.
Once again thank you all for your continued concern and well wishes.
Thanks Sharon.

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.