Wednesday, June 29, 2011

Cycle 6 - Back at Primarys

We are back at Primarys for cycle 6.  This is the last cycle before Cooper has surgery to remove the tumor.  Because surgery is soon they scheduled lots of tests this time along with the chemo.  Today he has had an Echo and Chest CT, tomorrow he will have an MRI and Bone Scan.  We meet with Dr. Randall who is his surgeon next week on Wednesday to set a date for surgery.  Hopefully we find out then if Cooper will have to do radiation.  The girl we met with his same cancer was told she probably wouldn't have to do radiation but after the surgery was told it is protocol and she was here for 4 weeks straight for radiation.

Cooper did well today.  His home health nurse has been accessing port and telling him she is putting a sticker on him so he isn't scared of a needle going in.  She hides the access needle and he has felt so much better about being accessed.  I tried to explain this to the nurse here at Primarys but he misunderstood and totally showed Coop the needle.  Oops!! Coop took a deep breath and they were able to access him easily.  Sweet little guy doesn't know the needle goes in every time, even with the "sticker".  His nurse is also very funny.  Coop came with the usual bad attitude and this nurse was able to get him to smile and laugh.  He has a farting machine with a little remote.  He let Cooper take when we went for tests earlier.  Picture this: I am holding Cooper in a wheelchair, he is hiding the machine and remote and we go in elevators and down long hallways with him pushing the farting button.  I tried to keep a straight face but the tech pushing our wheelchair and Cooper were both laughing.  It was pretty funny.  He has even talked to this nurse.  Cooper wanted me to run and get him chicken nuggets, I was gone for 30 minutes and the nurse and him were watching Lightning McQueen when I got back having a good time.  It has been a really good stay so far.  Right now he is sleeping, pretty tired from getting up early to come down here.  Hopefully we can have this nurse again, he is great!!

Monday, June 20, 2011

Its Monday June 20th - Coop needs blood and platelet transfusions

Cooper has managed to stay out of the hospital this recovery week but had a blood draw this morning and needs blood and platelet transfusions.  We are going in at 3:30 today to Portneuf.  Hopefully he doesn't get a fever, if so we will be staying.  The swingset is finished as of 1:00 today.  Here are some pictures.




Friday, June 17, 2011

More of Cycle 5 Recovery

It has now been 6 days that we have been home!!!  We have had so much fun.  Coop has been able to ride his bike, play with his brothers and sister, take our dog Zoe for a walk and play with his friend Wyatt in the sprinkler.  Here are a few pictures.  Coops counts are low but he still hasn't had a fever and he isn't low enough for any transfusions yet.   What a great week!










Monday, June 13, 2011

Cycle 5 Recovery

This is our second day at home after Cycle 5 and Coop seems to be doing well.  He has been playing, eating a little bit, and loving life.  He has been in the garage helping his dad and brother put a swingset together.  He is very excited to play on it.  He has been very patient.  We have had it in our garage since last Tuesday but Jared has been working and then we left for Salt Lake so it was put on hold.  Hopefully we finish it soon so he can swing before we leave again next week.


Friday, June 10, 2011

Cycle 5 June 10th - June 11th

On the odd cycles they give 3 chemos; Vincristine, Cytoxin, and Doxorubicin.  The Doxo is a 48 hour push and has been really hard on him.  He has been admitted for 9 days at Portneuf both times he has had this cycle.  Our oncologist decided to change the 48 hour push to two 30 minute pushes 24 hrs apart to see if his recovery is better.  This also means we just have an overnight stay versus a 3-4 day stay.  Hooray!!!  Here are a couple of pictures of our day so far.  On the first picture he has a big vanilla tootsie roll molded to his forehead, fun huh! Second picture is of a game that Brad and Kim Jons brought him today, he loves it.  Spongebob bingo and dominos.


Recovery at Home

 Cooper and I were home this past week because his platelets were too low to have chemo.  We had a great time at home.  Here are pictures of our family over the last few days.







We had tons of fun at home.  We go back on Friday June10th.

Saturday, June 4, 2011

Saturday June 4th - Discharged from Portneuf!

Yesterday was very comparable to the under the hopsital bed episode a few weeks back.  Cooper woke in a bad mood.  He was obviously very tired of being in hospitals, having vitals done, taking medicine, having blood drawn and everything else.  The day started with the nurse and medical student not being able to do vitals.  Then at 11:30 a.m. the nurse needed to premedicate for the platelet transfusion but Coop had be held down for the medicine which only fueled the fire.  Then they started the platelet transfusion, he was kicking and screaming by then and yelling "I don't want the yellow stuff, unhook me right now".  He would grab his line from his port and try to unhook it.  This went on for probably 30 minutes to an hour but seemed like an eternity for me and the nurse.  Cooper covered his head with his blanket and fell asleep for hours.  He had really worn himself out.  He had another blood transfusion right after the platelets.  When he woke up he felt so much better.  Jared was there and I took the other kids out for a movie and dinner.  When I got back to the hospital Cooper was in a great mood and having fun with dad.  It made me feel so much better.  It is really hard to see him so frusterated.

Marc is one of the nurses that takes care of Cooper at Portneuf.  He had a son with Evan's Syndrome which is treated much like a cancer patient.  He had chemo, many transfusions, and a bone marrow transplant.  Marc's family story is well written by his wife in a book called Little Green Apples.  I read it last night.  Wow, what a story.  I used almost a whole box of kleenex's to get through it.  There were many feelings and thoughts I was able to relate to even though their trial lasted years and ours has just begun.  Everyone should read it.  It is such a sweet story.  We are lucky to have Marc as one of our nurses, he really understands.  There are also many other nurses and staff we love very much at Portneuf, they try so hard to comfort us and make our stay the best it can be.


So this morning the doctor said his white count is coming up (ANC 252) but he is still borderline for needing another platelet transfusion tomorrow.  He discharged us and we will have home health coming in daily until his counts are higher.    Cooper had a big smile when I told him we were going home.  We are suppose to go for Cycle 5 on Monday but I bet they will push us a couple of day.  ANC has to be 750 for chemo.  So we are home and the kids are having fun.  Hopefully we have a couple of days before we leave again or need more medical care besides home health.


Wednesday, June 1, 2011

Back to Portneuf! May 31st until who knows when

Coop is back in the hospital.  He was admitted last night with fever.  He is getting ready for a blood transfusion.  He is very pale, doesn't feel well and just wants to sleep.  Poor kid.  Recovery is so hard.  We wish we could be home with the other kids and dad but we will do what we have to do.  This is becoming routine so at least we are all getting use to it, even though it is very hard.  No pictures, Coop is not in the mood.