Thank you friends and family!

6 Apr

Thanks for praying for me yesterday as i traveled to the city with the 3 little girls for medical appointments.

Lainee and Zinnia started out the morning with MRIs of their bellies (heart, liver).

I was told to expect it to take 4 hours, that they would be sedated to make sure they wore no metal.

so, their appointments with the hemotologist were not scheduled until 2:00.

When we met the nurse and got them dressed in their gowns ( yes, I know!  Even though we wore metal free :)

He (the nurse) asked me if I thought they could do it unmedicated.

He said, “they seem totally comfortable in the hospital setting”.

“um, yes, let’s try it!”

So, we walked out, 30 minutes later!

HUM…. 4 hours early to our appointment with hemotology.

I called the WONDERFUL hemo nurse on her personal cell phone and asked if we could come early.  She did what she could.

So, we ate, and ate, and dragged our feet and walked around and ended up getting seen at 12:30, walked out of the hospital at 3:30 and were home at 5.

Not bad.

We love “the craft lady” at the hospital!!!!!!!  Thank you God!  i talked one on one with the doctor for 90 mins!  The girls were totally entertained by the volunteer staff.

Mimi has beta thalassemia trait.  basically a nonissue, until she gets married and wants to conceive.  If she weds a man with thal. of any kind she is at great risk of having a baby that will have beta thalassemia major ( the kind Lainee and Zinnia have).Sometimes mimi looks yellow.  All her blood work looks fine.  it may just be the way her skin is in the winter!

Lainee and Zinnia still have SUPER high iron levels (7, 000).  So our goal this next 6 months will be to try to get that down.  She suspects it’s stored in their livers but the MRI results with show more.

She told me to try and see if the girls can wait 3 weeks before getting transfused.  She said to try to let them stay in the 9’s for a while, even down to 8.5.  She said that she would write a letter to our hospital telling them how to keep the girls on the same schedule, if one is high then the other, giving one more or less blood.   and we will up their chelation medication (xjade) to 875 ish mg in the next month or so.

She said not to remove their spleens

We will NOT be considering a bone marrow transplant because the mortality rate is so great.  this would be the only cure for the girls.  But, our goal is not to cure them, but to give them a healthy life and that would include blood transfusions for the rest of their lives which we would do with a smile when we hear of the risks of a NON-family member bone marrow transplant.  We just would never do that.  Cancer is another matter all together.  A cure is needed there.  But our girls do not need a cure.  Getting there iron levels down can give them a longer life.

She was totally on the same page as us when I spoke my feels after doing research.  She said, “do not consider bone marrow transplants for your daughters unless you are prepared to watch them die.”

I asked her to write everything done in a letter to give to our suburb doctors, where we transfuse.

She is an EXPERT and I loved being in her presence.  She’s a beautiful smart African American woman.  She has my respect.  I’m so grateful for all the attention and love and care we were shown yesterday.

On the way home Zinnia said, “mom, when will I get better?”

I said, “you are better!  but you will need to ALWAYS get blood”

“WHY?? What about when I’m a mom?? (most likely she will not have her own children, but we will see!)”

“I’ll watch the babies”

“Can I drop them off at your house?”

“Yup”

“But I also want you to be at the hospital with me when I get my blood, even when I am a mom.”

“OK.  I’ll come with you and we will bring your babies.”

“Oh mom, you are so so good, thank you God for MOM!!!”

It’s so interesting to think about what life will hold for us in the future, sigh.

:)

Then she said,

“mom, when I am a mom will I understand all the English you say?  Because when you talk to Christopher I don’t understand”

“YES!  you will know it all my dear!”

It is a very good thing that these girls are getting the medical care they need, after 7 years of very poor treatment.  We pray to reverse the damage that’s been done.  She even said to expect the bone deformity in the skulls to go away (of least importance to us but interesting).

This was   a long post!

I do this for my wonderful, praying friends and family, but I’m grateful for the encouraging words from so many others.

Thanks.

This is NOT our home.  Daily life is a constant reminder of our brokenness and sin and need for a Savior. We yearn more and more for our forever home in paradise with JESUS, where HIS blood will be ENOUGH!

In other news:

Christopher (our 9th grader) is playing on the Varsity Tennis Team.  We are so proud of him.  Chris has coached tennis-played tennis for years, it’s his sport so it’s so fun for him to watch our boys follow along.  He’s playing #1 singles right now.  To God be the glory.  I pray he has a winning heart on the court most of all.  Really to me, that’s all that matters.  Glory to God.

Good Friday, indeed.

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4 Responses to “Thank you friends and family!”

  1. Nicole April 6, 2012 at 8:11 pm #

    Laura, SO HAPPY FOR YOU! Sounds like your experience at the thal center was great! LOVE how they suggested trying the girls w/o sedation. We were told when Aaron is 7 or 8 we can try that. Also love how you got to talk at length to the doctor. And, love her honestly about BMT. Also want to say, there are women with beta thal major who do have bio children (I read of one who has 3 children!) I believe they need to stop chelation during pregnancy, and of course be transfused, but other than that…it is possible…
    Congratulations on a wonderful trip and experience at the hospital. HAPPY EASTER! Nicole

    • laurajonesjournal.wordpress.com April 6, 2012 at 9:48 pm #

      thanks Nicole! you are a great support to me. I have learned so much from you and the group. There are 2 women treated at Chicago with children. She was concerned because of the iron overloads damaging effects on the endocrine system. If they had been chelated earlier in life it would be more promising to conceive. the iron overload in the liver can be corrected but endocrine system not so easily. We are not worried~ we are planting adoption seeds!

  2. Sherri April 6, 2012 at 9:43 pm #

    Wow! I finally got time to get over here and look at your blog a little more. Oh my goodness, Zeke’s very BEST friend at the orphanage has the same disease your girls have. She ages out next November and he is so worried about her. Sniff. So good to see your family…looks like you have fun triplets. Hopefully, I’ll have time to read some back-posts soon! I love all you mom’s who supported me this past month!!

  3. KT April 7, 2012 at 2:24 pm #

    Yay for no sedation on the MRI! My daughter was able to do it, but I wished it only took us 30 minutes. She was in that machine with very few breaks for 2 hours! How I wish our girls to meet. Perhaps we need to take a trip to Florida. I used to live there as a kid and I loved it.

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