what would you do?

May 15, 2013 by nohandsbutours 13 Comments

Hubby and I knew God was calling us to bring home a second child, we just didn’t know who that child was… YET.

There was a special little girl that had a daunting special need. We didn’t completely understand it but her picture was adorable and being positive thinkers we knew there was a chance her diagnosis may be wrong. We felt very drawn to her – the pull of God.

We asked for her file and another agency had just taken it. We missed it by a day… was that a sign that she was not ours? Within two days we got word that if we were positive about adopting her the agency that currently had her file would transfer it. This little girl had waited a long time for a family and her health was not good.

We gathered all the information we could find – her old file – and prayed over it. We were both a little fearful. What if we adopted her and she died? That would be very hard for the whole family.

jean1

As I privately thought those thoughts… it dawned on me, it would be even worse if she died without a family. I felt like yes – we could be cowardly and not listen to God calling us. Or we could trust the Lord and trust that he would see us through this journey and that even during the HARD parts HE would not leave us. So many thoughts whirled around in my head. But the one thing I could hear amongst all the confusion where these words, “she needs to come home, she needs to come home, she needs to come home.”

As hubby walked in the house after work he said to me, “So what do you think?”

I said, “I don’t know? What do you think?”

He said, “I think she needs to come home.”

I just smiled and said, “I think you are right.”

And that was the beginning of bringing Abigail Elizabeth home.

jean2

The diagnosis was MDS. A pre cancer condition that eventually leads to leukemia. I did a little bit of research on it and of course only remembered the positives. God is so good that way. We felt his comfort throughout the whole process and Abby came home in December 2011.

For the next year she had many tests – liver MRI’s, liver biopsies, Bone marrow biopsies, CAT scan, MRI of her heart, etc. She has had blood transfusions every 3-4 weeks and chelations every 2 weeks, plus more.

jean3

The first diagnosis in the USA came back in March of 2012 as MDS. China was right… We immediately went to meet with the BMT specialists. A bone marrow transplant was her only choice and they seemed eager to have this take place sooner rather than later. HOWEVER, her liver was very unhealthy and having a BMT now would most likely result in liver failure. Her chances of surviving were not good.

We began aggressively chelating – to get the excess iron out of her liver. The goal was to get her liver as healthy as possible, to closely monitor her and watch for any changes in her health and signs of leukemia. In July 2012 she had another bone marrow biopsy- the samples were sent to Boston Children’s where they specialize in pediatric MDS. The results came back in October 2012. Abby did not have MDS but instead has Congenital Siderblastic Anemia.

jean4

AND WE EXHALED…

Whew… Praise the LORD!

This means she is no longer racing against time in regards to Leukemia. It is not a pre cancer situation.

Abby will have another liver MRI within the next month. They are anticipating that her liver is in better shape and the iron levels are way down.

jean5

Soooooo, what about the bone marrow transplant?

This is our dilemma…

A bone marrow transplant would cure Abby. That would be wonderful. No more transfusions or chelations. No more low, low hemoglobins. If it worked, her new bone marrow would be able to produce red blood cells that could carry oxygen in it. She would be healthy and live a normal life.

Wow, that sounds good!

BUT there is a 30% chance that the bone marrow transplant will not work and then she would immediately have to have another one. In that 30% is the chance that she will not survive the bone marrow transplant. And it may be questionable if her liver is actually healthy enough to withstand the chemo drugs that are used in the process.

They have found a 5 out of 6 point cord blood match for Abby. That is pretty good. BUT how good is pretty good?

The bone marrow transplant process is over 5-6 months long- if it goes well. She would be in the hospital for 30-60 days. Then if it goes well she would come home but she cannot be exposed to anything because she will have no immune system to fight it off. Our family is large and although we have been very healthy we have many possibilities of spreading unwanted germs

So the other option is that Abby has transfusions and chelates for the rest of her life. Her life will be shortened most likely(50’s- 60’s). She could at any time develop a reaction to a blood transfusion- I am not sure exactly what that means and what would happen if she did start reacting.

We are not sure what to do? How do people make this decision? What a huge decision this is… Do we wait until she can make it herself?

jean6

Right now we are still gathering information. We need to see the results of the new tests coming up. We would want to meet once again with the BMT doctors to see if her odds have improved and hear what they would recommend.

We have been praying over it and we know God will make the direction clear to us when HIS time is right. But sometimes someone else sparks a thought or can add new knowledge to a tough situation.

Please tell us – what are your thoughts?