Thank you

We got to come home from the hospital today.  Shad's ANC was 377 this morning which is well above the 250.  The doctors seemed to be surprised that it had gone up so quickly, so thank you for all the prayers in our behalf, I know they helped.
     Our stay in the hospital wasn't too bad however.  Shad was not allowed to go out and play with the toys which he wasn't too happy about, but he got over it pretty quickly.  I don't know if any of us could have handled many more days stuck in that room.  It seems that lots of people like to bring presents to kids in the hospital around Christmas time.  We were there for 2 days, and I think there were three different groups that brought gifts.  The armed forces ymca, the San Diego fire department, and a family that we didn't get to talk to, so we weren't sure who they were.  The hematology/oncology department also had a party yesterday, but Shad wasn't able to go, so they had santa bring his present and stocking down.

     All of the nurses that we had this time were great as well.  They were all really nice to Shad, took time to talk to him and play with him a little bit, and seemed competent at their job.  We loved all of them, and Shad did as well.  One nurse even let Shad keep her stethoscope for awhile, and play with it.

Our goal now is to make it through Christmas healthy and at home, and be ready for the next round of chemo on the 31.  Hopefully we make it!

Awww man...

Last night when Trevor and I were getting ready to go to bed at about 11:30, Shad started whimpering. I bent down to check if his catheter was pulling and he felt really hot. We took his temperature and it was 102. We called the pediatric floor (as we had been instructed to do if this happened). They told us to come on in, they would have a room ready for us. We quickly threw some clothes and other essentials in a bag and were out the door.
By the time we got to the hospital it was about 12:30. We gathered all of our stuff, and Shad and all of his stuff, and headed up to the floor. They first took him into the treatment room where they accessed his port and took some blood for lab work. They also took a urine sample to check for any infection coming from his catheter site.
After that we came to our room and got Shad all situated. We had to keep him awake because they wanted to take him for a chest x-ray. We got that done about 1:30, and then were back in our room for the night. We all got ready for bed at that point, and then Trevor and Shad were out. They came in about ten minutes later to start his antibiotics. He wasn't too happy about that, and had a hard time falling back to sleep. I ended up having to sit by him and rub his back for awhile until he calmed down enough to sleep. After that it seemed like it was kind of a revolving door until about 4:00.
At 3:30 a doctor came in and let me know that Shad was neutropenic, and also slightly anemic. They decided that they were going to transfuse some blood, to help with the anemia, and had me sign the paper work for that. The neutropenia is most likely what caused the fever. For those wondering neutropenia is when you have a really low number of neutrophils, a type of white blood cells. This makes it harder for your body to fight infections. Check out this link for more information.
http://www.cancer.net/all-about-cancer/treating-cancer/managing-side-effects/neutropenia
We will be in the hospital until he goes 24 hours without fever, 48 hours without the blood culture developing anything, and lastly and most importantly, until his ANC count is between 250 and 500. Closer to 500. His ANC is currently 87. We don't know how long it will take for his counts to be back up, but we are hoping (and praying) that he will get to be home for Christmas. If not though, we will just wait and celebrate when he is home, and hopefully he will not know it isn't really Christmas. We would appreciate any and all prayers as we work our way through this unwelcome (but somewhat expected) next phase of treatment. He is still his smiling happy self which makes it a bit easier for all of us.

Lately

     We had Shad's check-up yesterday.  Luckily it looks like we are going to make it through another round with no blood or platelet transfusions.  The doctor seemed pretty surprised, but our Shad is a fighter so we weren't too surprised.  We know that eventually he will need transfusions. but we will gladly take any round he can get through without them.  Unfortunately, his white blood cells took a bigger hit this time (completely normal), and so we are homebound for the next week.  He has another appointment on Friday, and we are hoping all his counts will be good so that we can enjoy Christmas.  
     The doctor wants Shad to have an MRI and a PET scan next week.  It isn't too big of a deal aside from the fact that he isn't allowed to eat any sugar the day before (it could interfere with the results).  We were hoping that they would be able to schedule it for Thursday or Friday so we wouldn't have to worry about monitoring what he was eating on Christmas day.  Unfortunately it is looking like we are going to have the scans on Wednesday, so Christmas just got a little rougher.
     On the mobility front, he is making so much progress.  Just yesterday he started trying to stand on his own by scooting to the edge of his wheelchair and then pushing himself into a standing position.  At our house he was sitting on a chair near the couch, and he scooted himself off, grabbed onto the couch and walked over to sit down.  All of this was out of the question just a few days ago.  This morning he had physical therapy and he walked from the far edge of our couch, around and to the bottom of the stairs holding onto our hands.  I carried him up to his room, and he sat on the floor and played with the physical therapist, crawled all over in his room and up and down the hallway, he stood at the window and looked out for a little bit.  It was seriously amazing.  I am so proud of him, he is scared to try new things, but he does it anyway.

Run for Abigail and Friends

     On January 12 we will be participating in the Run for Abigail and Friends in AZ.  We would like to invite any friends or family who would like to participate to do so.  You can register online or you can print out and mail in a registration form.  I believe there is an extra couple dollar fee for registering online (from the company that is doing the registering), but I am not sure.  If someone is choosing to run for Shad, and they win (1st and 2nd place for male and female categories, ages 1-16 and 17-adult) then Shad receives their prize.  Also when you come for the run that day you receive a raffle ticket and those tickets are then given to one of the children.  If you give your ticket to Shad and that ticket is a winner, then he will receive that raffle prize.  There is a 5k run/walk, and also a 1 mile fun run.  The winner prizes are only for the 5k, but I believe you receive a raffle ticket if you participate in either event.  The website with links to registration as well as more information is http://www.runforabigailandfriends.com/
     Shad and I are hoping to be there as long as his health permits it, but if we can't be there my mom will be there as his representative, and he will still be eligible for prizes.  We appreciate anyone who is willing to participate in his behalf.

Shad-isms (Medical Version)

"Is that the medicine so my throat (throw up) doesn't come out?" (Anti nausea medication)

"I have to have my emoferapy to get rid of that ball in my tummy." (the tumor)

"Are you going to use the arm hugger now?" (the blood pressure cuff)

"Are you going to hook me up to my bag so the pee pee comes out?" (talking about his catheter)

Hospital Round 2

     We are in the middle of our second hospital stay.  Shad came in on Thursday morning to do the port removal/port placement surgery.  He had his old broviac port removed since one of the lines had clotted the last time we were at the hospital, and then they put in the new portacath.  The new port should be a good thing because there is nothing on the outside of the skin.  This means less care for the port at home which is nice, there is also less risk of infection since there is nothing outside of the body.  When he comes in for treatments or check ups they will numb the skin over the port, and then stick a needle in to access the line.  Our biggest worry is that he will see the needle and freak out, even though it shouldn't really hurt when it goes in.  ˙Hopefully after he realizes that it doesn't hurt he will be okay with it.  He came out of the placement surgery with it already accessed, so we haven't actually seen how they do it yet.
     After the blood work that was done when we first got here, Dr. Pene came in and let us know that the AFP (Alpha Fetoprotein) levels (which are one of the markers for this kind of tumor) had dropped.  When we came into the hospital originally (before diagnosis) his levels were over 60,000.  Now they have dropped to just under 20,000.  That is pretty good for just one round of chemo.  The doctor let us know that if the level were at 0 they would stop treatments, but no one would get to a 0 with just one round.  Also, you can not feel the mass in his pelvic area from the outside as easily anymore, so that shows that it is shrinking.
     Shad has been having sporadic wet diapers, which also shows that the mass is shrinking away from the urethra, and he is beginning to regain function.  The doctors were hopeful that they would be able to take out the suprapubic catheter, but after trying it capped (not draining automatically), he started complaining of abdominal pain, and so they did a bladder scan.  He had quite a bit of urine that he was holding, so they uncapped him and put the bag back on.  Although it looks like we will not get it taken out this time in the hospital we are hopeful that we can get it out soon.  As the tumor begins to shrink function should be able to improve more and more.
     He is still handling the chemo really well.  He did throw up one time the first night of treatment, but he had also just eaten almost 2 whole McDonald hamburgers and some french fries as well as a bunch of pickles.  The nurse was flushing his line with the saline (which he tastes), and he pretended/made himself gag.  This in turn caused him to throw up.  Since then he has been doing pretty well in the nausea department.
     He has 2 days of chemo left, and then we will do the post hydration for 24 hours.  He will get a Neulasta shot 24 hours after the last round of chemo, and then we should be able to go home.  We are hoping for early evening on Wednesday, but it will probably be more like Thursday morning.
     We appreciate all of your prayers for Shadrach and our family, and hope you will continue to pray for us as we continue throughout the treatments of this disease.  We definitely feel the strength and blessings that are coming to us through the power of prayer.

Grandma, I have no hair

 Shad's hair began falling out last Friday.  We noticed that our furniture and pillows were beginning to look a bit "furry", and I quickly realized that it was Shad's hair.  Every time I rubbed his head I came away with a handful of hair.  He knew that his hair was going to fall out because of the chemo, and seemed to be ok with the idea.  On Sunday, we buzzed his head, hoping to make it easier to clean up, and to help the look of his hair as well.  He asked us to do it, and we complied.  He now has some bald patches, and some hairy patches.  He still has his eyebrows and eyelashes though (for now at least).
     Today when grandma took a picture of him he asked to see it so he could tell her if it was a good one.  After looking at the picture he exclaimed, "Grandma, I have no hair! Hmm, that's kind of weird."

I guess he didn't realize quite what he looked like.  He wasn't too upset by the fact though, so that is good.