Lucas Chronicles: Follow Up

Hello Readers,

I have been trying for 5 days to update my blog and now is the time I have.  Hopefully I can get through it before a doctor or nurse or someone comes in to ask more questions.  The last post I was talking about Lucas being back in the hospital to get another round of high dose methotrexate chemo.  That has come and gone and we have been in the hospital basically since last Wednesday.  Here is a breakdown:

Wednesday 12/19/12: Admitted to receive HD-MTX.  This time our Primary Team increased the fluid intake to assist with his levels clearing faster.

Thursday: 24 hours of chemo completed.  Post hydration begins. Leucovorin rescue drug begins

Friday: At hour 42, MTX levels are .29.  The minimum at this time need to be .4.  He cleared, but will have to stay until hour 48 to make sure there isn't a spike in the levels. Hour 48 his levels .23.  8pm we are discharged and sent home.

Saturday: We are back in the ER for more hydration because he is throwing up.  Shortly after, Lucas is readmitted for observation.

Sunday:  We are discharged with the hopes of spending Christmas at home.

Christmas Eve:  We spend the day at home.  Lucas isn't eating but he is drinking.  By the afternoon, the drinking has subsided.  HE is feeling worse and teetering with a mild fever.  He has minor mouth sores and is pain when he pees. Diaper rash is getting bad.

Christmas Morning: 2am Lucas wakes us and he is on fire.  102.2 Temp.  I get dressed and gather our hospital bag, call the hospital and get on the road.  We arrive in the ER and access his port.  Draw blood work and start fluids.  6am we are moved upstairs and readmitted.  The nurses were wonderful and our room was filled with a big bag of gifts and a note from Santa (whom we just missed!!)  Mommy and Franco brought the presents and Franco opened his gifts here in the hospital room.  He told me later that he didn't mind opening his gifts at the hospital because what mattered was that we were all together!

Lucas began to develop severe mouth sores and a raging diaper rash which we could not get under control.

Wed-Fri 12/26 thru 12/28:   We met with a wound care nurse who educated us on what to use and what not to use.  I can give you more details on that if like at a later time.  We also met with the pain management team and it was decided to put him on a PCA with dilaudid as pain medicine.  This machine allows Lucas to get a steady flow of pain medicine and we have the option to give it a boost if we feel it is necessary.  Throughout the next few days the PCA has to be increased because Lucas' pain is too much.

Saturday 12/29: The mouth sores and diaper rash are getting better.  WE think is throat still has sores because he doesn't want to swallow or spit out anything.  He hasn't eaten or drank anything since last Sunday.
We changed bedding, suction tubes, and pulse Ox meters. When we took his socks off we found that he has some pooling of blood in his ankles.  It is time to get him up and moving a little bit more.

I will spare the details in writing of why this all happened but let me be clear that the severity of this outbreak is not normal.  We have had numerous discussions with the Dr's. and nurses to make sure this is avoided in the future.  We are staying in the hospital until he is able to drink and eat on his own and when the sores are more manageable.  

The site of your child bleeding and writhing in pain from medication that is supposed to kill his cancer is something I wish none of you have to experience.  I have cried everyday this week because of the stress and pain.  I am glad that my mom and aunt were able to come out and spend a few days with us even though it has been in the hospital.  When Lucas gets home he will have a ton of gifts waiting to be opened.

Thank you for your continued support and please help us by donating or purchasing wristbands from this site.   The money goes to pay expenses not covered by our insurance.  It is not cheap to stay in the hospital.  Parking, gas and food are the worst.