Wednesday, June 3, 2015

New Diagnosis

Our lives seem to be quickly changing from day to day. One minute I feel like we're dong great and we have a handle on everything and the next minute we're falling apart and are consumed by the unknown.

La Petite Belle did amazingly well on her second dose of meds. The only side effect she experienced was skin reactions. 

Everything was running smoothly. The medicine was definitely working. Her white blood count was 0.7, which was expected. Our room was made into a reverse-isolation room, meaning the air is not circulated in the room, but moved outside into the atmosphere. Pretty cool. Everyone had to suit up to come in ... masks, gloves, and gowns.

We felt good. Treatment was going as planned.

She had been begging me for and craving edamame. Finally, friends pulled through and dropped some off for her. She was happy!


After 5:00 pm, the doctor came in. Beau had already left for the night and La Petite Belle and I had just finished dinner.

The doctor asked me where my husband was. I told him he had gone home. Then the doctor said, "Do you have a pen and paper to start taking notes?"

I didn't understand. I asked, "What's going on? There's so much information that I need to take notes?" He told me there would be a lot of information that he was about to explain to me.

My heart sunk. 
Wait ... more information ... lengthy information?  Hadn't we already been through enough and learned so much about things we didn't even know existed? I really didn't want to know any more information.

He proceeded to tell me that he had just received a fax from the lab with more results from La Petite Belle's last bone marrow biopsy. This time they did find more information on what would cause this aplastic anemia. Before, there was no cause found in all the testing.

He gave La Petite Belle a new diagnosis - Myelodyplastic Syndrome (MDS). For the longest time, the doctors didn't have a cause for the aplastic anemia and now they do. MDS can cause aplastic anemia.

MDS happens because the bone marrow cells do not develop into mature blood cells. Instead, these blood cells stay within the bone marrow in an immature state. 
Basically, they found some abnormalities in La Petite Belle's cells ... chromosomal issues and so complicated to explain. This was what Robin Roberts was diagnosed with if that helps explain it. She also went through a transplant.

The treatment or what they say cures MDS is ... you guessed it ... stem cell transplant. So, we are back to that. This means the doctors will decide this morning whether or not to finish the immunosuppressive therapy (at least the 4 days) or just stop it. Our doctor would only do the four days and not do all the other drugs.

Now, the doctors are all in contact and the stem cell transplant process will be expedited. How soon? Who knows? Maybe a few weeks. Really no idea. I just know the transplant coordinator who contacted me weeks ago will be working more quickly with any of the potential matches she may have.

There were tears shed after the doctor left the room. La Petite Belle cried and said, "I just want this to be over. I just wanted this to work." I cried. Then Beau joined she and I in the bed and we just held each other.

Then, we talked about how this could be a blessing. MDS if not treated can lead to leukemia. It used to be categorized as "pre-leukemia". MDS can be treated before that happens. This was detected early so now we just try to speed up this transplant process. We also talked about how it really didn't change much on the treatment options. We always knew a transplant could be the final option. 

I told La Petite Belle, "God is still a Healer." 
Through tears, she said, "I know."

Just because we know God is our Healer doesn't mean stuff doesn't hurt. It doesn't mean we aren't scared of the unknown nor want to go through pain. We are confident God is with us.

We are praying for quick answers, a perfect match from a willing donor, and the process to move along as fast as it can. 

I am hoping to be able to know more and have answers (like I always force people to give me quickly) soon!

2 Comments:

Lisa Wee Tom said...

Daphne, I'm sorry to read about what your family is going through at this time. Please know you're all in my prayers until healing is manifested.

Lana said...

I truly believe God for a miracle for her. She is such a beautiful, strong and faithfilled girl. Standing in prayer with all of you and believing for total healing! Love to all