I am a mom of a cutie pie (very biased). And I wanted to share my experiences with others (including my cuties grandparents, great-grandparents, numerous uncles and other relatives). I love being a mom and can't imagine doing anything else.Biopsy
Alivia did amazing today. She is such a trooper. The whole visit went as good as can be expected. It started out a little rocky. For some reason they had a really hard time getting any blood out of her port. It took over 20 mins of poking and proding before they finally got some. All the while James and my dad were putting on a comedy routine trying to keep Livi happy. It worked for the most part...until they had me lay down with Livi on top of me and that was how they finally got the blood. She didnt like that at all. Then we had an hour to waste so we painted some crafts, looked at the fish and did backflips (pretty much) to keep Alivia happy and unaware of how hungry she was. She couldn't eat anything after 5 am. This from the girl who usually eats about every 3 hours.
The counts came back and weren't good. Well no thats not all true the plateletes went up and the reds stayed the same. Unfortunetly the WBC's more than double since last week. We are now at 145. Darn it! Then we went up to the south OR. Livi tried her best not to freak out but was pretty scared. Poor girl. Then they had me sit on the bed and hold her while they gave her meds to put her under. She was completely freaked and screamed while looking longingly into my eyes like "mom take me out of here". I just wanted to push everyone aside and run for the hills. The procedure went fine and she woke up happy. What a trooper. She was eating cornflakes (her new favorite snack) within 20 min and ready to get out of there in abou 35. Unfortunelty she is now going back on Hydroxeuria. SO we had to hang out at the hospital and wait for the prescription to be made up. We had some lunch and got the meds and now we're home. I was hoping we wouldn't have to go back for a week but we have to go for counts on Thursday. But only counts. As long as all looks well we'll be heading to my parents for the weekend.
Over and over today the nurses mentioned how touched they were by the gift bags. Again my deep, heartfelt thanks to those of you who participated. Some notes are still trickling in and I am going to take them with me soon....in other words if you didnt get yours in the mail and still want to go for it. Here is another thank you note from one of the nurses
To the entire Haughery/Allen family and circle of friends, and especially Alivia.........
"I finally got a chance last evening to sit down and go through the mountain of thank you cards in the gift bag you gave me last Thursday. I was truly overwhelmed by the cards and had tears in my eyes before I was halfway through.
In my 25+ years as a pediatric oncology nurse, I have never experienced such an outpouring of gratitude and I am humbled and awed by all of it.
I just want to thank ALL of you for your gift[s].I am the one who has been truly blessed and privileged to have met all of you and Alivia, and all the children and families over the years. My life is richer for all of these experiences and I have a much deeper appreciation for the "little things" as a result.
We are all in this together, and we will get Alivia through this together. It warms my heart to see how loved she is by her parents,grandparents,uncles,cousins, extended family, and SO many friends.
Again, thank you does not seem adequate for what you all did. I am very, very grateful!
Sincerely,
Denise Gibson
[one of Alivia's nurses]"
Thanks for praying. Please continue to pray and ask for a miracle. Ask that these marrow samples are more clear and point the docs to an answer and that that answer is an easy one (not something really hard)
I am starting to collect the info on bone marrow donation and will post it soon so that those of you who want to donote (and most of you should want to) find out how too. Even if you couldn't donate to Alivia (if she doesn't need it...which is what we are praying for) there still might be a child out there who's life you could save. Can you imagine how great it would be to be able to do something small that might end up saving someone's life? I will get all the info and try to write a more indepth description of what it entails.
posted by Alivia's Momma @ 3:12 PM
10 Comments:
i am praying for all of you. i pray that her WBC counts go back down. i play that everything does well, and you can go to your parents.
Lots of prayers!
Christi
emily,
we continue to keep you in thought as you continue down this road of questions and chaos. we will pray that the counts on thursday are favorable so you can head out to indiana.
thanks for keeping the site updated and laying yourself open to others.
james, it was good to hear how you are doing under this trial. you are a great husband and father.
lmmb
It was good to have the Haughery/Allen clan together for this day. I wish the circumstances were different, but I do love to see BIll and Cynthia.
Cynthia, you are a rock for me...and for Emily too. Another Haughery woman contributed too: Vivian (Matt's wife) brought over a delicious meal...it was SO GOOD...thank you for serving Emily, James (and fortunately us, too!...I would love to get the recipe). Livi is doing well, of course, her back is quite tender, but she recovered from the anesthesia better this time around.
She is still her same darling self; just with some very sick marrow. Thank you for your calls saying that you are praying...it is such a support. Love you all. Gigi
Emily,
I read your blogs everyday and pray for Alivia every day. I was touched by James message the other day and actually cried at my desk, thinking I am not grateful enough.
Betsie
e- thinking of you this evening and praying for all of you to get some good rest tonight. what an encouragement it is to hear from the nurses, how they were blessed! thank you for thinking of others and acting on it! so grateful you're surrounded with the amazing family He has blessed you three with! goodnight, kb
Emily, thank you for doing such a great job blogging for us! I am always hungry for news and to just hear how your day went. I know I keeop thanking you, but truely it is the biggest blessing in my life right now that you do this. Today the tears came when you mentioned the "look" from Alivia that said "mommy, get me out of this". I remember that look once when Aaron was 3, and being held down on a table getting stitches on his face. It was probably the worst feeling of motherhood I can recall. I was not two feet from him and he was pleading, unable to understand why I wasn't saving him. He kept crying "help me mommie!" and I didn't. And that look of confusion and pain... Excruciating. So, I know a tenth of what you go through in those moments. I still apologize to Aaron periodically for that one thou of course he laughs and doesn't even remember it. Oh, how I pray and long for the day when we can tell Alivia all about this time and she can laugh and not even remember!!! Lord, may it be so!!! All my love and prayers,
Aunt Marcy
Emily,
Look at how the Lord is using you! Thank you for taking the time to share the note from one of the nurses. What a powerful thing you have done. I admire you so, so much because in the midst of your pain and suffering, you thought about those nurses and found a way to touch them. It reminds me of Jesus, when He was hanging on the cross. In His agony, He cared for John and His mother and the thief beside Him. That's what you've done. In your agony, you're caring for others. How do you do that???? It's a mystery to everyone who is watching.
God is using you in a place where you DO NOT want to be, for people you never would have known. It's amazing.
We pray, we pray, we pray, "Father, could this, please, be the day that you heal Alivia?" every day, many times. We'll keep knocking, asking and seeking Him with you. You have an army of people who won't stop knocking on our Father's door, who won't stop "pestering" Him, who won't stop asking Him for the thing that we desire. This is exactly how Jesus told us to pray, so we will.
We love you and James and Alivia.
Kristi
Emily,
It's been a long time since we have been in touch, and I don't really know where to start. So, I'm just going to let it all rattle out.
Thank you! I just received your blog address...reading through your life has opened up the door to a different world for me. How ungrateful I have been over the past 6 years! My little boy, now 6, was born with a rare illness that has affected every bit of our lives. But, he is not fighting for life. How selfish I have been!
I am finding it difficult to even type as your strength and words have completely overcome me. You are trully amazing. I have spent much of the last decade filled with bitterness and anger and have been stuggling to hold on to my faith...questioning the Lord every bit of the way. So, thank you.
I have held Alivia in my prayers everyday since I heard of her sickness and will continue to do so. What a blessed child she is to have such a strong and loving mother.
Christi (Helsing) Carnahan
Emily, James, Allens, Haugherys
We are praying for you all and for Livi especially. It's funny that I can't really think of anything to say besides that, so I'll just keep praying!
p.s. Two things:
1) 335 has never looked so empty from 344. We hope to be able to say "hello" this weekend.
2)You can't keep our friend Erin out there forever! :)
Love, Steph
Emily,
Drawing blood from the port can definitely be a positional thing. If they have trouble again, have Livi raise her hands above her head or take deep breaths, and laying down can help too. Hopefully, they will always be flushing it correctly. If you know what size needle the port is that can be helpful to know so the nurse don't keep trying different size needles to acess it. If you ever have any questions about transplant, email me, it's what I do all day long every day. Praying for you guys. Sorry I missed you all when you were down here for Karl's wedding.
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