what would you do?

May 15, 2013 by nohandsbutours Congenital Siderblastic Anemia, Jean 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.

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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.

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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.

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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.

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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.

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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?

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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?





13 Responses to “what would you do?”

  1. Tanya Baer says:

    Hi Jean! I am the mom to a little girl with Thalassemia, adopted from China. The anemia sounds so similar to Thalassemia. Molly is transfusion dependent and receives regular transfusions and chelation. I would not risk her life with a BMT, it has been repeatedly offered to us. I am praying for gene therapy to advance and be the cure for these kids one day. Happy to chat. I sent you a friend request on FB. We have a ton of mutual friends! Hugs!

  2. rlong says:

    Are you certain this isn’t thalassemia? Please seek another opinion….and please join our wonderful growing groupof parents of children with thalassemia. Wehave a yahoo groupand a fb group. Friend me or email me …. Rebecca bauer long on fb. Longforababy@yahoo. I have two girls thriving with transfusion dependant thalassemia. Doctors always push for a BMT.

  3. Angie says:

    I am sorry, I don’t have any wisdom to offer. Just a reminder of what you already know to be true, Trust God He will show you the way. He has plans for Abby, He won’t let you mess those plans up. :) We do our best with our human wisdom, but it is God who decides how those plans go.
    Proverbs 16:9 9 We can make our plans, but the Lord determines our steps.
    Proverbs 3:5-6 5 Trust in the Lord with all your heart and lean not on your own understanding;
    6 in all your ways submit to him, and he will make your paths straight.
    Isaiah 14:27 27 For the Lord Almighty has purposed, and who can thwart him? His hand is stretched out, and who can turn it back?
    Hang in there! He has you guys all the way thru this. I know that you will get lots of good advice and that is great. Proverbs 15:22 22 Plans fail for lack of counsel, but with many advisers they succeed. Will be praying for you guys!!

  4. Katie says:

    Another Thalassemia mom here chiming in to say that we have all had the BMT shoved at us at some point. Tough decision to make! Praying God grants you His wisdom. Feel free to email me any questions!

  5. hollie says:

    Tears over here! Oh, I am so sorry for the difficult decisions you have in front of you and I have no wisdom to offer other than what you already know…God will work it out and someday you will see why He made things fall into place. I was reading your article hoping that the end would tell me everything worked out just fine. It didn’t, but what i am taking away from this is that she has a family of her own who, no matter what, loves her every step of the way!!! I will keep you in my prayers for sure!

    I have been contemplating adoption for…well, most of my life. My husband was on board for a special needs child but due to some personal circumstances it can’t happen right now. And sadly we aren’t getting any younger. Perhaps God will show me the way too. I pray for my little one that i inquired about recently–pray that she finds a family even if it isn’t us.

  6. Leslie says:

    Different special need, but I can relate to thinking what do we do? And knowing the great risks. DH and I wanted so badly a few weeks ago to pull out of Sallie’s heart surgery. But in the end, we decided to move forward because of her quality of life. She was getting weaker and she couldn’t do even some simple things (for her) b/c of her low oxygen levels. So we took the leap and God is so good, and He brought her through it amazingly, miraculously healed.

    I guess the big question for me would be quality of life much more so than life span. 50-60 sounds GREAT from where I sit with a couple of children who are looking at 30-40 probably. As for waiting until she can make the decision, I say absolutely yes if her life is not immediately threatened AND her quality of life is good. Hope this helps Jean, and thank you for sharing such a vital post. This could really help others considering adopting children with life-threatening needs. Many hugs and prayers your way too.

  7. Eileen says:

    What a horribly hard decision! We have not had anything so difficult, but our daughter had a liver disorder that may someday require liver transplant. When she was 2 years old, she was half-way to cirrhosis. BUT, her liver was functioning fine. For her, the tipping point was that her chance of a full recovery was better when she was younger–and it was still such a low, low chance. Her drug treatment wasn’t anywhere near as difficult or as long or as risky as a bone marrow transplant. We decided to treat when she was 3 years old. Her doctor said she worried about neurological damage from the drug if she was too young. After a year of treatment, she had the best possible result. But at the same time, I would never tell someone they absolutely should make the same decision we did if their child was in the same situation. It has to come down to prayer and fasting and research and second and third and fourth opinions and then you just have to do what feels right.

    I’m sure you’ll be guided to what is best for your sweet girl.

  8. Kris says:

    Jean,

    I understand your concerns about immunosuppression – my son (adopted from US foster care system) is on the kidney transplant waiting list – very medically stable and manageable with peritoneal dialysis. He is so toatally healthy and normal at this time that I have difficulty with the choice about whether to accept a kidney when it is offered because of what anti-rejection drugs may do. Our family is a healthy group, too but I can undertand you wondering how to proceed. My only comment on making that descision is this: when treatment is truly approprialte and needed, God will make that clear to your family and the pathway will be clearly laid out for you all.

    Kris

  9. Debbie says:

    I think 30% would be too great of odds for me. That’s almost one in three that have complications. As long as she was fairly healthy, I think I would wait until she wanted it. But if she felt sick all the time, I might go for it.

  10. Molly Thomas says:

    Such a hard decision! Praying for wisdom.
    I talked with my dad, a phenomenal physician who does tons of research. He said not knowing your daughter personally and her quality of life now, he could not give a concrete answer. But from reading your post and studying a lot about chelation and BMT, he said that he would probably go for the BMT. It is a long time to wait for her to make a decision. It would probably be a rough couple of months, but it would be worth it if she could be done with these weekly transfusions and chelations.
    May the Lord bless you and the doctor’s hands!

  11. Wendy Hoff says:

    Hi Jean, Obviously you know I follow your blog….love hearing about your little ones and big ones. Reading your concern with what choice to make makes me recall a conversation I had with another RN just today. We were talking about medical science and how advanced it has become. She was telling me her husband hurt his eye 9 years ago and at that time there was nothing more they could do. Well, jump forward a few years and 4 years ago, they found something they could do and were able to fix his eye and subsequently, his eyesight. I guess what I am saying is maybe just moving forward with what is working right now will buy you the time for medicine to come up with a better treatment option or , God willing, a cure. Maybe it is ok, for now, to not make a decision to do surgery and just keep moving forward and letting time help her by allowing scientists to develop a better, surer treatment option. God bless you and your family….and I cannot wait to follow your journey to the next little ones!!!!!

  12. Aus says:

    Wow – let me begin by saying that this simply sucks…completely.

    Not that you (or all of us) don’t know that already….

    I don’t know that I have any “advice” about the decision – but maybe more about “how to make the decision.”.

    the summer is on us – your daughter is feeling better – and for the moment is not in “immediate danger”.

    Why don’t you take a “holiday” from making this decision – 3 months – 6 months – a year? Mark a date on your calendar. don’t trouble yourself with trying to make this one for now – go LIVE instead…

    And in what ever time you choose – come back and look at it again – maybe, just maybe – the decision will be clear.

    Hugs and prayers –

    aus and co.

  13. Karla in MN says:

    This is a really difficult situation. I will tell you a bit about our story…also you can go to the Caring Bridge website and look for Sanjay Baca.

    We adopted 2 unrelated children from India with Thalassemia Major when they were 2 1/2 and 3 years old. Soon after we brought them home we had Ports “installed” so that the monthly transfusions and blood testing would be less traumatic. Sanjay was a bit more severe…occasional reactions and after 6 years his kidneys were getting cranky. Chelation was not working as it should…could not increase dosage as he was having reactions to higher med doses. when he was 10 years old we decided on BMT . A few weeks after the transplant he developed an unexpected brain bleed that should have killed him. He rallied, miraculously! but the day before leaving ICU he developed another massive brain bleed and God called him home. I firmly believe that God is in charge of life and death…but as a mother it is so easy to get caught up wondering if your decisions caused harm or even death to your child. Strong faith has sustained us…but my heart is not capable ( at this point) to put our daughter Josy through BMT after that …even though she wants to do it. IF her quality of life is good, I suggest waiting for medical advancements. But most of all, Pray. I thingk it may be a wise idea to take a year and just LIVE, then revisit the idea. God bless!

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