This chemo started off GREAT! Mallory has been a trooper minus some more throwing up than usual but I can't complain to bad for all that she has to endure she just keeps on shining through.
As of today there were a few complications, her hemoglobin hit 7.3 the lowest it has ever been. She developed Tachycardia (an irregular heartbeat) because of the hemoglobin being this low. She had a blood transfusion today hoping that will straighten that out. This is her 6th one since she was diagnosed and the largest amount she has ever received.
She has been extremely restless, she just cannot calm down. She just moves, and her lip quivers and her smile just is barely there. She was finally able to get a little bit of rest early this afternoon and a nice walk around the circle.
We had 2 young children (1 for 2 nights and the other for 1) in the room next to us that you could hear straight through the wall making it very difficult to sleep for 3 nights straight and then last night Mallory could not calm down so needless to say this Mom is EXHAUSTED!
Mallory is just not herself, her blood counts are already super low and we still have chemo tonight. :-( Poor Sweet Pudding.
I have met SOOOO many amazing wonderful incredible people this week. What a blessing to have such hopeful, inspiring people to look to for support and guidance. I pray for their little children too as we are all on this road together. So we love you ALL SO MUCH! You have touched our hearts in every way possible.
My parents are just SPECTACULAR, they went and got Jillian a new twin bed for there house (THANKS NANCY!) and new bedding that she just LOVES. How special is that her own big girl bed for when she stays the night! "Tinkle tinkle lil staaa, how wonner what are? Up abooo ta world so sky. Tinkle tinkle lil staaa" - Jillian is sooooo sweet. She started singing to us ALL the time. She also prays with us now and we say "God Bless Mommy, Daddy, Mallory, Jillian" and She always chimes in "Nana, Nana, Nana, AMEN". This brings a huge smile to my face.
Catecholamines (I spelled this HORRIBLY wrong on the last blog!) are excreted through the urine. They tell us her adrenal hormones that are typically high in neuroblastoma, we want these numbers as low as possible. When she was first diagnosed they were in the high 200's, came down to 140 after the first tumor was removed and back up to 170 and now with just 1 round of chemo they are at around 60. They are divided into 2 number VMA and HVA and both numbers have dropped significantly. This is a good indication that the chemo is doing it's job although nothing will tell us more than her next CT we can only continue to pray that this is the right course of treatment she is on. Although it makes her very ill we know we are doing everything that we possibly can so that our daughter can continue to live her life, so that she may have many days on this earth. I leave this weight on God's shoulders to get us through this no matter the outcome but pray each and everyday for healing, for strength and guidance.
I updated Take them a Meal
If you have to search use "Wiersma" as the last name and the password is "love".
We are looking for people that can bring hot foods up to the hospital and lots and lots diet cokes lol.
We are not just asking for you to bring me food and leave but I sit there majority of the day doing nothing but rocking mally, sleeping, it gets pretty boring. So some company would be great as well.
You guys are the Spectacular ones...for all you are going through. We are just trying to make staying at nana and papas a little bit more fun for Jillian. I cannot wait for the warmer weather so we can run a muck outside. I love being out side with the kids!!! I love you guys so much!!! Keep the faith and God will lead us through!!!ReplyDelete