Day +40

Where does time go?  I can hardly believe we are almost half way to Day +100.  Naomi responded well to the Neulasta injection she received last week and her ANC and WBC counts both rose. Her RBCs, hemoglobin and platelets are all well above the need-for-transfusion-rate, making it 29 days since her last platelet transfusion and 14 days since her last red blood transfusion. That is very exciting.  I am so grateful for how well Naomi is doing.  Her doctor is also very pleased with her progress and has given us a week until her next appt!

That was the short update…. now for my journal….

Clinic appts involve a scheduled lab draw.  Then about 90 minutes later, we meet with the dr to go over the results.  The fun part is that wait in between!  Today was quite an experience with all six children and just me at the clinic.  It was certainly a juggling act to keep them busy and not bored, happy and not bickering.  It included a glass jar of water shattering and Cait falling on her face, literally – fortunately not both at the same time.

Having a week before her next appt, I am not sure which sounds more insane: hanging out at the House all week, or taking six children on field trips by myself.  I honestly considered sneaking home for a few days. But decided that our presence at home would be a distraction to Aaron as he tries to play a bit of catch up at work this week. The children and I will just rough it at some nature parks and beaches instead.  So, I am looking forward to some field trips.  We may as well take advantage of the nice weather and good health. 🙂

A fun thing happened when we were at the clinic today.  Before I tell you about today though, I have to give a little bit of history….  Over the past 5 months, I have been forced to stop wondering what others think of me, or my child(ren).  I have had to ask difficult questions and not be afraid of the answers.  I have had to be strong when I wanted to crumble.  I have had to be encouraging when I really wanted someone to be encouraging me.

We went to the park over the weekend and Naomi was wearing her Broviac shirt and her mask, as she often does.  I always see people looking at her.  Anyway, as she played like any other child there, I saw other parents looking at her and at me.  A few months ago, I would have become overwhelmed with fear of what they thought of me, or her.  As usual when around others, a few parents asked about Naomi and I answered confidently and without shame that she was recovering from a bone marrow transplant and doing really well.  Some ask more questions and other shy away.  I have learned that their response is about their comfort level with the situation and not my own.

Our family has been through so much over these months and is coming out the other side stronger for the struggles we have lived through.  Each person in our family has had their own experiences, struggles and growths as a result of Naomi’s illness.  I can remember receiving card after card saying things about being strong through the storm and that the sun will shine bright again.  There were the cards that said that we do not understand why these things happen.  I was stuck THERE for a long time.  But in hindsight, we were right where we needed to be all along – we did not know why this disease struck our child, but we chose to remain faithful and be as fearless as possible through it all.

So, anyway, today at the clinic….. all six children were in the lab and the nurse came into the room and stopped in her tracks.  She was not sure which child was Naomi because none of them looked like they needed care.  She looked around the room at each child and remarked at how cute each of them were.  She remembered Micayah first and said that he was the donor.  She then realized that Naomi was Naomi and remembered seeing us late in 2013, before the transplant.  She said, “oh, wait, you are just here for the day, right?  Will you go back to Vegas tonight?”  We said that we were here until maybe Day +100.  She looked shocked and said, “You already had your transplant?!”  We said that Naomi had and was at Day +40 today.  The nurse marvelled at how great she looks and that she has so much hair.   It was a really happy moment for me.  The events of the past few months when others looked at her with pity were all wiped away in my heart with the realization that each day moves her a little bit closer to having a completely normal childhood again.

Most importantly, the look on Naomi’s face while the nurse was trying to figure out which child was “sick” was priceless.  I could see the smile going deep.  She was so proud to feel normal.  I was so happy for her.

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