Day 112: Feeling Yucky

Last week, Elliott began the 3rd phase of chemo, the Interim Maintenance phase after a two week delay due to a fever and low counts.  This phase will last through the end of December and will include four 3-4 day hospitalizations.  We completed the first hospitalization last week and were grateful to move forward after being delayed.  The reason for the hospitalizations is because every two weeks, Elliott will be receiving a high dose of methotrexate.  The high dose requires 5 1/2 hours of hydration prior to administering the chemo, then the methotrexate infuses via IV for 24 hours, followed by a rescue drug and even more hydration to help cleanse it out of his system so his the levels of chemo in his blood are low enough for us to go home. 

It was kind of appropriate that this wagon was from the Congenital Heart Surgical Unit (CHSU) since that was the unit he was first admitted to when we initially came to the hospital.  If you recall the pictures from day 1 when he was connected to everything, that was in the CHSU

Strolling around the floor with the chemo still infusing

We have been so blessed that Elliott been tolerating treatment so well thus far, but this past week proved to be very challenging.  The hospitalization itself went fairly well.  Elliott was admitted on Thursday and we were able to go home Sunday morning.  Elliott loves to "people watch" on the floor, so he likes for us to leave the door open and wave as people walk by.  We know most of the nurses and techs on the oncology unit by now and they know him, so he has lot of buddies that come check on him.  By day 3 in the hospital, I think he was getting bored and was ready for a change of scenery.  He enjoyed some time in the playroom on Friday with Rachel and then on Saturday, William was able to locate a wagon on the floor and spent the next hour plus riding around the floor with him, which he thoroughly enjoyed.  He did not want to get out.  Once I arrived later on Saturday to give William and break, he convinced me to go exploring on the floor again. 

On Sunday morning, Elliott was able to go home and fortunately for William, we were home well before the Jaguars game came on.  Since he has been home, Elliott has been pretty fussy and it is very clear to us now that he is not feeling well and is frustrated not being able to express what is going on.  He has been experiencing nausea and even some vomiting (both side common effects of the methotrexate) and also has developed mouth sores (another common side effect).  On top of that, he is teething and has several new teeth coming in, and is drooling like crazy!!  It's a good thing we have such a large supply of bibs because he is going through a bib an hour it seems.  His appetite has been affected and his sleeping patterns are a bit off, so it's been hard because we want to help him, but its hard to know the best way to comfort him.  For the most part, we just cuddle with him and try to play when he is up for it.  Laurel has been with my parents since Friday to allow us to focus on Elliott while he was in the hospital as well as try to keep up with work, but Laurel came back home today and Elliott was glad to see her.  She always seems to cheer him up a bit, so they enjoyed a little play time and she got Elliott to imitate some of her "car sounds" as they played with cars on the play mat.  Elliott has a oncology clinic appointment today, so he will get his usual labwork done and we have a list of questions and concerns to talk to the oncologist about, so hopefully we will get some helpful tips or reassurances.  William is taking him to the appointment while I go to work, so I already passed on my list of questions to him :-).  At least he won't have chemo this clinic visit, so it should be pretty straightforward.  He does have an oral chemo medication that he is taking, but it has a fruit flavor that he doesn't mind too much.  It's too bad I can't say the same about the antibiotic he takes on Mondays, Tuesdays, and Wednesdays.  He absolutely hates that, but we certainly want to make sure we can prevent infections, so we are going to try to locate a different flavor or at least get some flavoring to help. 

Class is in session...

I mentioned my parents kept Laurel for the past few days to give us a break and time to focus on Elliott while we are at home, which worked well since he has been feeling to yucky and Laurel needs attention too, but the weekend before, my mom came over to play with the kids so William and I could do work. My mom, being the educator she is, helped Laurel set up her "classroom" upstairs with all her dolls and stuffed animals.  So, special thanks to my mom for keeping Laurel occupied and thank you to William's mom for supplying such a large quantity of students (dolls and stuffed animals) to educate :-)

Hopefully we will have another update shortly and perhaps one of us will make a post, but in the meantime, we appreciate the continued prayers from everyone who is supporting us from near and far through this journey.  The support from our family, friends, extended family, church friends (old and new), care ministries, daycare, neighbors, co-workers, and even people we don't know is deeply appreciated.  We apologize we haven't been able to respond expression, but know it means a great deal to our family and is deeply appreciated.  I read some blogs and support groups and I am amazed that so many people go through this journey alone or without a support structure and thankful we are not in that situation.