Moving Forward

Today was our trip to City of Hope to meet with Dr. Pawlowska, Naomi’s new doctor who is the Director of Bone marrow transplant (BMT) at City of Hope (COH). Meeting in a conference room, rather than an examining room, was a welcome change. We were joined by Naomi’s Nurse coordinator and Social worker. Aaron and I both left feeling confident in her team and the path that we are on.
Dr. Pawlowska gave a us a good mix of risks and optimism.  Typically, it would take a large dose of chemo to wipe out the patient’s bone marrow, which may also make her permanently infertile.  A newer protocol that has been effective for Aplastic Anemia sufferers is to use a low dose of chemo with an overlapping ATG protocol – this helps to reduce the chances of her becoming infertile.  The combination of this new protocol and a sibling donor who is a perfect match means that Naomi has a really good chance for full recovery.  This protocol has been very effective and has a good history of engrafting success.  She also explained that the current supportive medicine available to those who are going through a transplant means that her side effects will be managed well.  Typically, the side effects were something that has been a difficult issue in the past for those who have gone through transplants.
We expect to be in the hospital for 6-8 weeks and in CA for over 100 days. Ideally, they will release her from inpatient care and we will visit clinic a few times a week while staying in CA for about a total of 110 days. Dr. Pawlowska said that we might be able to leave early, if doing well, but typically they like to keep transplant patients close to the hospital up to Day 100 post-transplant.
We are anxious to move ahead and have a tentative time-frame that has Naomi and I arriving at COH to check-in around the 10th of December.  This would mean that she would be going through her conditioning regimen on approx. Dec 11-19 and have a transplant date of Dec 20.
Micayah’s procedure will all be as an outpatient.  On the day of the transplant, he will go into surgery and be completely anesthetized while his marrow is removed from both hips simultaneously.  After the surgery, he will recover at the hospital and then be released to go home the same day.  Before he is fully recovered, and possibly even awake, Naomi will already be receiving his marrow through her catheter.
We will report back to COH the first week of December for one last meeting with her team to cement the dates.  Between now and then, there are many tests to be completed and prayers to be said.  We also have the logistics of housing to figure out since we cannot stay at the Village on Campus because no children under the age of 18 are permitted there unless that child is a patient.

4 thoughts on “Moving Forward

  1. By Jennifer D’Auteuil — Nov 20, 2013 10:35am
    Such positive news and steps in the right direction! So happy for you! Feeling your anxiety, but I remember at this time thinking that it’s just the path to health. Thinking and praying for you all.

  2. By Katrina S — Nov 19, 2013 11:52am
    Oh wow. I ache for your family and for all of the stress and worry. I’m so glad Naomi has competent and caring doctors and support staff, and that the new protocol looks promising. We will continue to lift Naomi and all of you in prayer.

  3. By Ross Wilson — Nov 19, 2013 8:27am
    I will say a prayer for all of you on your safe journey and that everything goes Ok while your out at the City of Hope and then your safe return.

    Uncle Ross/Ross

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