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