Update: 02/12/2016 - Maroon for Maisie


BGVTers!!! This family was in the PICU at Cleveland Clinic Children's the same time we were with BRODIE. They've been desperately searching for a MATCH for their 6 year old little girl - Maisie. Maisie has severe aplastic anemia and needs a bone marrow transplant - Maroon for Maisie.... There are two things that I have to ask of you.

#1 They may have found a match for Maisie. In Germany. A 24 year old. This could be an absolute miracle for this family - this man needs to complete testing - he has taken the first step - blood testing.

Please PRAY, send JUJU, good VIBES - what you all do best so that this sweet little Maisie can have a chance to go on to live the good life. If you want to be tested please go to www.bethematch.org

#2 They have met a little girl - Lucita (10 from Honduras) who is getting treated and is inpatient at the Clinic. She is in isolation and cannot have any visitors - Maisie and Lucita have become fast friends through silly faces, goofy smiles, sending letters and drawing pictures to one another - could you help raise Lucita's spirits?

Church? Girl Scouts? Boy Scouts? Kids Clubs? Sports Teams? VALENTINES DAY LOVE?

Please send this sweet little girl some LOVE - can you imagine being 10. 10. 10. in isolation - in a different country. fighting an epic battle. A battle of life or death? Heartbreaking.

If you cannot send a letter, maybe share this post - let's get LUCITA LOVE LETTERS and both sweet littles GOOD VIBES!

9500 Euclid Avenue
Cleveland, Ohio 44195

A beautiful day begins with a beautiful mindset. When you wake up, take a second to think about what a privilege it is to simply be alive. And what a difference you may be able to make in someone else's life. A little bit of YOUR kindness can make a huge difference in someone elses life. SPREAD KINDNESS. SPREAD LOVE. SPREAD GOOD VIBES.

#‎lettersforlucita #‎maroonformaisie #‎brodiesgoodvibetribe #‎chooselife#‎thegoodstuff

Maroon for Maisie

February 5 · 

Maisie is feeling good. She had a recent inpatient stint due to a fever but she has been home all week. Maisie’s ANC count is on the rise again, which may mean she is over whatever virus she was fighting last week.
We received the results from Maisie’s recent bone marrow biopsy, which showed less than 5% cellularity in her bone marrow. These results confirmed it is very likely that her drug treatment therapy is not working. While it was not easy to see the results of the biopsy, we were not surprised, as most of Maisie's counts continue to remain low.

After we received the results of the biopsy we started to firm up plans for our next move with Maisie's treatment. In the process, we were informed that they found a potential bone marrow match for Maisie!!!! The match is a “10/10” match from a 24 year old male in Germany!!! Amazing! THIS POTENTIAL MATCH HAS NOT YET 100% COMITTED TO DONATING HIS BONE MARROW, but he has submitted blood work and we are hopeful that he will eventually donate. Please keep praying.

Maisie's doctor informed us that we are planning to head down parallel paths. Because Maisie is "stable", her doctor would like to make it through flu season before starting chemo and heading into transplant. We will keep her on her drug therapy during flu season in hopes that we may see it start to work. If her drug therapy ends up unsuccessful, we will also plan on heading inpatient at the end of March to begin conditioning, with the transplant at the beginning of April (which depends on her potential bone marrow match going through with the donation).

Maisie understands that her body is not working correctly, and that we are working with the doctors to get her "insides" working the right way. We never lie to Maisie about what is happening regarding her treatment. She usually tells us what she wants to know, and we follow her lead and answer her questions honestly.
During one of her hospital stays, she told the nurse, "I declare -- I hate this place!" I firmly believe that Maisie's hatred for inpatient stays is based mostly on the fact that she feels so isolated when she is there. This girl's need for social interaction is something fierce! Maisie's dislike of inpatient stays made me very nervous to tell her that her current medicine might not be working and that she might have to spend a longer amount of time in the hospital. When I broke this news to Maisie, she was very quiet. She did not ask many questions. So I left the conversation alone. A few days later out of the blue, Maisie informed me that she was going to be "Ok." She said, "Mom I can totally go and stay in M53 again. I am not alone there. I have Lucita. I can do it. I can stay there. I know that I am not alone there." While we never let Maisie stay by herself when she is in the hospital, she spends most of her time with adults and she misses kids so much. She misses her siblings, her cousins, and the rest of her family and friends. I know that she draws her strength from other children. I think it took Maisie a few days to process the thought of staying in the hospital again, and while she processed it, she drew her strength to start this new battle from other children. She is not alone and she knows it. That is AMAZING! This girl can do this!

The transplant road holds no guarantees and can be riddled with complications. If Maisie has to go that route, I am confident that she can do it. She can fight this battle and she will draw so much of her strength from other children. Again, we are following Maisie's lead and it is beautiful and strong. She is AMAZING!!!!!!
Please consider Lucita this Valentine's Day. If your children have an extra Valentine please think of sending one her way. Lucita is also not alone and it is so important to try and show her that. She truly reads every card that comes her way and the cards are a wonderful part of her day. She LOVES them and the support. She draws strength and happiness from those cards.

9500 Euclid avenue
Cleveland, Ohio 44195

Thank you all for the support. Just like Maisie, we draw so much strength from all of you supporting this journey. Thank you.

We kindly ask that you continue to keep Maisie and Lucita in your prayers.

God Bless,