Weekend Update

I have been back and forth between hospital and home over this weekend. I was able to attend Mass for the first time in about a month. It was a great way to spend the afternoon with the children. I slept at home with the kids both Friday and Saturday nights. Tomorrow, Aaron will have to return to the office practically full time. So, our kids will be shuffled between neighbors and friends throughout the week while I manage their homeschooling via email, text, and phone.

It breaks my heart that after so many years of them being with one of us full time, they have to go be with others. I am thankful for the friends who have offered their home to our children though, especially like-minded friends with values like us and homeschoolers or sweet neighbors willing to help and support us while we continue with our educational choices. I look forward to this season being over, Naomi being healed, and life taking on a new normal. But for now, we press on through chaotic days and separated times. Today marks two weeks since Aaron and I have been home together and in that time, we have had the children all together for less than 6 hours total.

Beginning tomorrow, her dr will be contacting the lab daily to determine if we have a donor match among the children. We continue to plan for a transplant. Research shows that if there is a sibling match and the AA patient is a child, there is more long term success with a transplant. Her immunosuppressant protocol could lead to relapse and eventual need for a transplant in the future and at a later age, a transplant can be more difficult. Being as severely neutropenic as she is, she would need a miraculous recovery and fast to stop her transfusions and be able to put a transplant off. Believe me when I say that I prayed hard for a miraculous recovery today.

Her WBCs fell again today to 1.6. Her dr is still happy with her counts, especially since the RBCs are dropping less rapidly. She received platelets on Saturday night and so her intestinal bleeding slowed today and so her RBC levels reflected that. Her ANC level was lower today because she lost those bands. She did retain her segs. But she also had monos appear. Monos do not count towards her ANC count, but they do reduce her risk for infection. We will take whatever we can get at this point.

The best news this weekend is that she was permitted ice chips beginning Friday. Then, today, she was ordered to be allowed fluids and broths. I had chicken broth brewing at home and strained some and took it in to her immediately. Tonight, I have beef broth starting for her. We are so excited that she can begin to reintroduce food to her stomach.

Her spirits are really good. She was wanting to press the call button last night and then tell the nurse, “oh, forget it. We took care of it already.” She is obviously getting bored! Today, she was tickling Aaron and being mischievous with him. That is my girl! So, I am taking school work along to the hospital tonight and tomorrow we are going to attempt to do a few subjects of lessons. We will start with reading, spelling, grammar, math and CCD. Just a few minutes of each to break her back into a learning routine. I think it will help the days to go more quickly, too.

Today is October 27, 2013. Today marks the one month anniversary of her diagnosis, the insertion of her PICC line and her first dose of ATG.  It seems like it has been so much longer than a month. It feels like the longest month of my life. In the past 34 nights, she has been in the hospital for 23 of them. As we head into another week and the second month of this journey, the reality is hitting that things are getting more difficult for our family.  We have decided that her transplant will take place at City of Hope in Duarte, CA. At some point, she and I (and her sibling donor?) will be air flighted there and Aaron will stay behind with the rest of the children and visit us sometimes.

My prayer is for the path to be clear for us. If her counts continue to be as low as they are, and transfusions as often as they’ve been, we will know that she needs the transplant. However, if she is blessed with a miraculous recovery and transfusions become unnecessary, then we may be able to put off a transplant and see if full recovery on ATG and cyclosporine is possible. With one month down, we would expect her to be transfusion free within two more months.  Just in time for Christmas…..

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