CHEMO: week 8, nervous habits!!

Today was a really good day! 

Since Riley was still accessed, we didn't have to fight to do that but he was very scared to de-access him. I think he asked me 1000 times if they were going to "take out" his port! It just hurts so bad to get the tape off and he just cries.

We only got Vincristine today which is wonderful, maybe we can continue to climb out of this low count we've been in! 

After our VERY RUFF last week, we are surprised his counts are doing good! His low counts we were worried about transfusions on, came up! And his high counts that we have never been worried about, came down, but still at an okay level. 

WEEK: 1    2    3     4     5     6    7    8

  HGB:   14.1    12.9         ??      11.7      10.7    9.5   9.8   10.3   (less then 8 is bad)   

  Hct:    41.8%    37.8%   35%  33.2    30.2   27.4    28.6   29.7 (less then 24% is bad)   

  WBC:  10.5      4.7         3.6      4.2     2.3       1.9   6.3    3.7    (5.5 is a low normal)

  PLTS:   621      288        272    347   280      288   466   168   (less then 30 is bad)    

  ANC:   7.6       3.0          2.2     1.5    1.5          .6     2.4    2.3   (less the 1 or .5 is bad)

His body amazes me everyday. He is so strong and fighting so hard.   

His platelets are the lowest they have ever been but not to worrisome yet. If he bleeds and can't stop for 10 min then we need to rush to the hospital but other then that we are good.

  

The Doctors are very concerned about his constipation and the hard stool he had on Friday. Vincristine is the drug that causes this and we still have 2 more solid weeks of it. So if Riley doesn't get drinking with a TON of mirilax.... and keep it down, in a couple of days we will be in the hospital "cleaning him out". Which means a NG tube down his nose to his stomach so they can push meds through and have him poo until it is runny like water, which takes about 24 hours. NOT FUN and very TRAUMATIZING. So let's get praying for poo!! haha!! No really!! 

Riley has picked up some nervous habits since this all began..... he picks at his lips until they bleed, which drives us crazy!! He also bites his fingernails..... nothing like a germ fest going right in his mouth! He also grinds his teeth all night long..... that with sucking his thumb still, we will have a whole lot of dentist visits soon!

He has picked up quit the vocabulary as well...... the words he uses when he is mad or angry or sad is.... I hate you, your stupid and your an idiot. I DO NOT know where he got this from. Probably me.... saying I hate cancer! But he says it to everyone and EVERYTHING, from his crayon to his toys to his shirt that he can't get off. 

I just have to let him vent and get it out and try to say things like.... you don't hate it, you just don't like it or you are just mad and that's okay to be mad. I fully understand this is his way to express how he is feeling but when your sick 5 year old that you take care of 24-7 says I hate you... it can get hard. Daddy is a softy and it tares him apart but 4 minutes later when Riley calms down and runs to you to snuggle and says I love you...... It's all worth it again!! 

I'm so grateful for everyone involved in our lives. We COULD NOT do this without you. I am so amazed at the community and the love and support we have received. I can't express to everyone who is involved in this amazing fundraiser how THANKFUL we are to have you and we appreciate all the hard work and time you have spent already. My dear friend Angie who is the captain of this and has put her heart and soul into it to make it all happen is absolutely wonderful and fantastic in every way!! I love you all and will gladly spend the rest of my life paying it forward...... all because of you!! Thank you!!