Well, it wasn't quite the news we were hoping for. Ella's platelets are REALLY low. They are 36,000 and should be at least 140,000. Last month they were 91,000 and they were hoping they would go up but instead, fell quite a bit. The good news is that there still aren't any blasts (leukemia cells) in her blood. So the doctor wants to do another bone marrow biopsy to see what's going on. I guess they can get alot more information from the marrow and will be able to see if there are any leukemia cells forming in the bone marrow that just haven't made it to the blood yet. There is something that is causing her to have such low platelet counts and we need to get to the bottom of it. So Wed. morning we make the hour drive back to CHOC for the biopsy. The part I dread the most about this is getting her IV in. They have to sedate her for this test and need the IV to do this. Last time, it took us an hour to get an IV line in her. Please continue to keep Ella in your prayers!! The other bummer is that unless her platelets come back up in the next couple of weeks, the doctor has advised us from taking our 2 week road trip :( Of course we will do whatever is best for Ella but we are REALLY looking forward to this vacation. He is just concerned about bleeding issues that can occur with low platelets. Hopefully she will get back on track before then.
These pics were taken in Corona today on our way home from the oncologists. Its a nice little mall area and we stopped for dinner and then just sat by the lake and enjoyed the cool evening breeze. It was VERY hot today so the cool down felt wonderful.
20 comments:
My prayers are with you and your entire family, I can imagine the disappointment and naturally how worried you must all be. But you must continue to stay strong and positive at all times. Ella is truely an incredible not to mention totally adorable little girl I just love her beautiful smile. I know there is an angel watching over her at all times and all will be well.....
My prayers always with her
Just turning in now and have been waiting for an update.I wanted to call but didn't want to bother you.I won't write what I first said when I read the beginning part of the post,little eyes don't you know??But seriously my heart sank a bit but ... with that I rebounded when I heard no blasts.You know,in our house the "B" word is a bad word!Denise,you are one of the strongest mothers I know.From the moment I first spoke to you as you were researching TMD,I could just feel that genuine spirit about you.I wish you didn't have to be strong.But we just gotta do what we gotta do.And I am here with you.Every step of the way.Feeling so blessed that we live so close in distance and knowing no matter what,together we will face what will come.And at this point,that is NOTHING.Darn pesky platelets AND it figures she decides NOW to get mobile!I'll call in the morning.Don't answer if you don't want to.I totally get that.But know I am here and just a car ride away.Always.
My heart just skipped a beat reading the beginning of your post. I know all too well about those darn platelets. I'm thankful no blasts have been detected. We'll be praying for all to go well for the bone marrow test. More importantly, we'll be praying the doctors are able to get to the bottom of the low platelet issue. Please know we will be praying for sweet little Ella and of course, your whole family.
Denise, as always, keeping Ella in my prayers...and you and Dad too!
Praying you get the answers needed on Wed to breath a sigh of relief and move on. I know I'm far away but I am always here.
Praying for Ella here! I hate IVs too, even though Addy is almost 3 we still have to put IVs in her head. They don't like doing them there due to her age, but it's the only place they work.
I just read your story of when you found out that Ella had DS and our stories are very similar. I didn't realize Ella was born with a low white blood cell count because I was wondering why you were even visiting the oncologist. I will keep her in my prayers for sure! I hope she continues to remain healthy and I know she will continue to bring so much joy to you and your family!
Definitely keeping that beautiful little girl, and your whole family in our thoughts and prayers. The waiting and uncertainty has got to the worst part. Let us know how the bone marrow test turns out. -- Also praying that you get to go on your road trip! :)
We are praying very very hard for Wednesday and for the IV placement and especially for those results!!! Let us know if you need ANYTHING!!!
Denise, you are in my prayers...I will be saying a special prayer on Wednesday morning for you and thinking about you guys all day! Little Ella is strong and hope you can get the results fast...I would want to get to the bottom of it too...Love ya Ella! BIG HUGS from Brayden! and me!
Oh... sweet Ella and Mommy. You will be in our prayers. Love you guys and hope all goes well! We are sending lots of hugs and kisses your way.
So sorry that the numbers aren't what you were hoping for. We will definitely keep sweet Ella in our prayers. Praying that tomorrow goes well.....
My dear friend...keeping Ella in our prayers and thoughts as always. She is a strong and precious little girl. No matter what they do or don't find, Ella will always find her way as I am sure you will. I know we are not that close in distance, but I am always here if you need me. so sorry another biopsy is in the works, but hopefully it will give some answers, some peace and a plan. Love to you my friend!
Oh poor Ella, I can't imagine having to do a bone marrow on such a sweet little girl. We will be praying for an easy IV start and a clean bone marrow.
I'm so sorry to hear that news. I will be praying for you and Ella on Wednesday - for an easy IV placement, good results and strength and peace for you and your husband.
Praying for that sweet Ella and your family. Praying that the results will be better after the bone marrow and you'll have the answers you need.
I will be praying for you on Wednesday! I totally get the IV thing, after 7 months in the hospital, Pres' veins are HORRIBLE!
Do what I do, I don't even allow a floor nurse to touch her with a needle, I tell them immediately and right up front to call a NICU or PICU nurse, or better yet, a nurse from their transport team, they are the best at it!
BigHUG and I will be checking back!
What a passel of beauties you have!
Denise, I's so sorry. I hope you can still make it, but Ella comes first, and we will be out there in Aug. so we'll definitely stop by.
Do you like CHOC? I took Jax there once and didn't like my nurses and stuff. I'd love to know what you think if you've been there a lot. It helps me decide what hospital I want for Jax when we move. Keep us updated. Love and kisses from me and Jax.
Sweet little Ella, get those counts up! You will all be in our thoughts and prayers. What would be the other reasons that would cause a low count? Give Ella a big hug and kiss from us!
Hope that everything goes well for Ella and your family. Keep us posted. Love you.
We are hoping for the best. The blood platelets are so important! I had 4 platelet transfusion when I delivered Mackenna years ago of course under totally different circumstances, but oh how important they are! I hope and pray Ella's count goes up. God Bless Her!
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