Quick Update

Hi Everyone,

Julia has been home now for 3 weeks and is doing very well. She is still on overnight hydration but we will attempt to take her off very soon. She is going to clinic on Friday and will have her biopsy and scans next Friday. Depending on the scans and how comfortable doctors are I will try and negotiate taking out her PICC line so she can enjoy the summer. We would also like to plan her wish trip ASAP.

Julia went to school today, her first day in 6 months. She was so happy and excited that she got up at 5:00am and asked me if it was time to go to school. Today at St. Julia's was an award assembly and the school presented Julia with an award for courage and bravery. She was so cute as she walked to the front of the gym to accept her award. She gave her teacher a big hug and then came over to me and gave me a big huge. When we asked her tonight what she got the award for she said "because I am brave mommy". She also said "did you hear all those people cheering for me mom, it was so loud". Adorable. On a sad note she asked me if she would be able to go to school next year for the whole year or if she was going to get sick again. I was lost for words. How do you explain to a 4 year old what all this means. I hope and pray that she will be able to attend the whole school year next year.

Thank you for your on going support and I will keep you all posted on next weeks results.

Thanks
Nadia

Quick Update

Hi Everyone,

Julia has been home for a week now and she is doing well. She goes to clinic twice a week for now which means we spent more time last week at the hospital than home. Her counts were bottomed out and she needed to get a platelet transfusion last week. Because her blood work was a little off a condition of staying home was to go on overnight hydration for 12 hours. Her home care nurse comes every night to hook her up to the hydration and every morning to disconnect her. The good thing is she was able to get her a portable pump so she is able to be mobile while receiving the hydration. I feel really bad for her as she is a little confused as to why she has to be hooked up at home. Hopefully she will begin to eat better, gain some weight, and be able to hold her own levels so the hydration won't have to stay on too long.

She will be back at the hospital on Friday for Oncology clinic and we will meet with the heart transplant team next Thursday. Now that her chemo is finished she must have some cardiac testing done (yes more invasive testing). Her heart biopsy and CT scan have been confirmed for July 9th. This will be the day that will tell all. If she is in complete remission and whether or not she has any rejection going on. It feels like we just get over one thing only to wait anxiously for the next.

Normally the PICC line would come out 3 months after treatment ended but because Julia relapsed 4 months after treatment and 1 month after pulling the old line doctors have already told us that they will be in no rush this time to remove the line. This puts a damper on my plans to get her on her wish ASAP. As I've learned (the hard way) this year you never know what tomorrow will bring. I was hoping to get her on her wish while she is feeling her best. We will wait and see what the tests show on July 9th, and then I may have to negotiate with the docs.

The last week has been really busy trying to catch up on the last 4.5 months and adjusting to being home again. The kids are also adjusting to being all together again. Especially Julia who is use to having my undivided attention the last 4.5 months. Anthony and Emily want all my attention (and rightfully so), but Julia will not have it. It's a real juggling act, and a fine line between playing favorites. I guess it will just take some getting use to for all of us.

I thank you all for your messages and e-mails welcoming us home. I look forward to being able to spend time with all of you very soon. I will keep you all posted on how Julia is feeling.

Thanks
Nadia

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.

Sincerely,

Nadia

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