Monday, June 7, 2010

Home Sweet Home

Hi Everyone,

I am happy to report that after a very long 4.5 months at Sick Kids Julia was finally discharged today and I am writing to you all from home. This did not happen without a little drama first. The plan was to be discharged today if all was well with her blood work. We discussed the plan this morning in rounds and it seemed everyone agreed with the discharge, although we did not have Julia's blood work back at this time. I left the floor to get a coffee and as I was returning to the unit all the docs and nurses were starring at me with this very sad look on their faces. I knew.....the blood work wasn't good. The doctor told me that Julia's blood work was a little off and she needed to get some hydration for a few hours and then repeat it. By this time it was already 2:00 in the afternoon. The repeat blood work came back and although it had improved slightly it wasn't great. Thank god we have had the same fellow (Dr. Kevin as Julia calls him), for the last 4.5 months and he so wanted to see us go. We all starred at each other wondering what we should do...stay or go. The suggestion was to stay and watch how she does but Dr. Kevin could see the disappointment in my face and looked at me and said "I want you guys to go home". We both smiled as he rushed to print and sign our discharge papers. It was a very emotional goodbye. All the nurses said bye and gave us hugs and were really happy to see us go but at the same time really sad. Since we have spent so much time there we really had developed quite a bond with many people and truthfully I saw more of these nurses and doctors then the rest of my family. The one condition of our discharge is that we return to clinic on Wednesday to check Julia's blood work.

Julia completed her last and final round of chemo last week. She was vomiting the first few days and then developed high fevers on day 3. The fevers lasted the full 5 days of chemo and then she turned around. Considering how sick she felt she really turned the corner quite quickly (thank god). Her counts have totally bottomed out and normally you would wait for count recovery before coming home but because we've been there so long and Julia has been clinically well the decision (with a little begging) was made to let her go home and count recover. We will need to return 2x a week to clinic until count recovery (probably the end of June). The only problem is that since her counts are bottomed out if she develops a fever or feels unwell she will have to be re admitted.

Now we sit, wait, and watch. Julia will have a PET/CT scan along with a heart biopsy on July 9th. The scan will confirm if she is in complete remission and the biopsy is to check that her heart is fine after chemo. Going forward our next challenge will be balancing the immunosuppression to make sure her heart is fine and at the same time we are not over suppressing her allowing the cancer to come back. This will be a very challenging balance since Julia has proven to be a child who suffers from rejection. Since this was a relapse for Julia doctors will be watching her very closely.

This has been an incredibly hard year. I have missed so much of Anthony and Emily's life that I will never be able to get back. In the hospital I lived each day battling new challenges Julia faced and really fighting for her life. Now that I am home I live in fear that the disease will return. I hope that in time I will be able to relax and resume somewhat of a normal life. For now I spend my time worrying and wondering what will happen next. For those of you who know Julia she is an incredibly strong little girl with such determination and will to survive. I pray everyday that this is the end of hard times for her and our family, and hope that life from here on will become easier (we really need to catch a break).

I know I have thanked you all before but I really can't express how much all your support has meant to us this last year. Without all your thoughts, prayers, and support we would not have been able to do this alone. It's because of good family and friends like you that we were able to survive. Thank you, Thank you, Thank you.

I will keep you all posted on how Julia is doing, and I promise that once things settle down I will return calls and e-mails. Please continue to pray for Julia that she remains strong, brave, and cancer free.



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