Thursday, March 13, 2014

More details (post from Esther)

Thank you for your continued prayers! Know that they are working and have been a great source of comfort during this uncertain time. Last night was uneventful and we were preparing to be discharged today. At 6:00 in the morning, the nurse woke me up to tell me that Ava would need a platelet transfusion due to her low counts. They knew that an allergic reaction was a possible side effect but because Ava did beautifully with her blood transfusion yesterday, we were not that concerned. However, 10 minutes into the process Ava woke up screaming in pain. We brought her over to the toilet and she continued to scream in pain while she began to diarrhea. She quickly developed a wheeze and when we placed her back on the bed, she vomited again and again. A team of nurses and doctors ran in to manage the reaction and she was given an epi (I was the lucky winner to administer it) and several other medications to bring the reaction down. Watching her lay in her own vomit and feces, I felt so much for her. Can there be anything more undignified than death and illness? Today I am that much more thankful for the cross.

Later while cleaning up her sheets, I saw vomit mixed with blood and the hair that had begun falling out. It was a stark reminder that this was really happening. For some time now, I've been living in waves of denial that would come and go with the days' events. Recently, I stayed afloat due to Ava's improved demeanor. Losing hair is an inevitable effect of chemo but the fact that she had not lost it yet also gave me have a false sense of hope that this was all just a big misunderstanding. It seems silly to say but, now that she is losing strands and strands of her beautiful hair, the idea of cancer in her body is finally setting in. The nurses and well-meaning people all around remind me that hair grows back. I have even said it several times to Ava after she lamented the fact that I had chopped my hair off. Both Ava and Gwen were highly unimpressed by my efforts to transition Ava into losing her hair. Gwen's response to my new hairdo was, "EW, MAMA!!!" I know that hair grows back. However, in my weakest moments, I fear that Ava won't see that day come.

In the same breath, we learned that Gwen was not considered a match for Ava. This was definitely disappointing as it seemed that a perfect match from a sibling was the most ideal situation for transplants. Also, blood tests showed that Ava's blasts were trending upwards. Since we finished the first round of chemo, the only thing left to do is watch and wait. We earnestly pray that Ava would show exceptional response to her treatment at the end of this month. We also desperately pray that Ava would not need a Bone Marrow Transplant but if she does, we pray for a perfect match from an unrelated donor. 

Otherwise today was a good day with Ava moving about and playing like a normal 5 year old. We took "family walks" through the halls, sat on the windowsill and gazed out at the city lights, and then I held Ava until she fell asleep. Despite all the bad things that happened today, we had great moments as a family. Also, thanks to the oral steroids she was taking for her allergic reaction, Ava ate lots of food and gained back much of the weight she lost the past few days. The plan is to be discharged today barring any incident with the platelet transfusion Ava will receive in the morning.

Thank you for your continued prayers that Ava would get through her treatment without incident and that she would be cured of Leukemia. 


Fu-Lin Shau said...

Hi Mike and Esther,

This is Fulin from NSCCC. Just want to provide a few info regrding the largest asian (or Chinese) stem cell bank in Taiwan in case Ava need it.

This bank was created by the largest non profit organization in Taiwan. They have about 300000 stem cell recorder (mostly from Taiwanese/Chinese) right now. Due to the scale of the bank, they helped a lot of Chinese patients who need bone marrow transplant. You may want to go through deatils.

We keep praying for Ava and Lee families.


Nicole Padron said...

Thank you for your raw and honest posts. Know that you are being heard and so will your prayers.

By the way, I think your hair cut looks adorable! :-)

jaemom said...

What a great suggestion, thank you!

Brenda Bateman said...

I have traveled the path you are on. I pray for Ava and you all to physically feel the Lord's embrace today....and to experience the lifting of the thousands who are praying for you.

Doris and John said...

Hi Jaemom: I am currently living in Taiwan and if there is any questions you need me to ask the stem cell bank please let me know. I am more than happy to take care of that for the Lee's.

Doris Lee

jaemom said...

Thank you, Doris! I will let you know.