The Easter Bunny

  Today had a bit of a rough start.  We had an appointment to get Shad's counts checked, and were hoping to do a few other things while we were there.  I had an appointment scheduled at 8:30, but it was just down the street so we were hopeful it would all work out.  There was some confusion, a lot of waiting, and very little time actually getting blood drawn, but we made it out of the hospital by 8:25.  We booked it to my appointment, and arrived about 5 minutes late.  I was immediately taken back.  My blood pressure was a little high and the doctor asked if it had been a stressful morning, and Trevor and I just laughed.  She said she understood, and would wait a few minutes and take it again.  She had a hard time finding baby's heartbeat with the doppler so she brought their tiny ultrasound machine with a very fuzzy picture in to check it that way.  I wasn't too worried because I had felt the baby moving not long before, but it was nice to get to see him or her again.  The doctor is really patient with Shad and let him help her push buttons and identify parts of the baby.  He was excited when they said we were going to see a picture because he wanted to find out of it was a girl or boy.  The doctor said their machine wasn't good enough to tell that, so he was a little sad, but got over it pretty quickly once he saw the baby on screen.  She even gave him his own picture of the baby which he thought was pretty cool.
       We went back to the hospital to get the results of Shad's counts and also to give him his shot and get some help with a cap change question we had.  We ended up not needing to do the cap change until Monday, got the shot taken care of, and his counts were low but good enough that he didn't need any transfusions.
       As we were on the way out we were told that the Easter Bunny was going to come visit outside in the "garden" area.  We went out and waited in line.  Somehow, we must have looked nice or something, we were asked to talk to some of the news people that were there.  Shad wasn't very verbal, but cooperated.  Below are 2 videos that were shown on the local news.  Shad thought it was pretty cool when he saw himself on TV.

San Diego, California News Station - KFMB Channel 8 - cbs8.com San Diego, California News Station - KFMB Channel 8 - cbs8.com

Surgery and more...

Thursday was Shad's surgery for his apheresis catheter. He was scheduled for 1:20 and we were told he couldn't have any food after midnight, but he could drink clear liquids until 10:15. He had more than his fill of apple juice that morning.  We were asked to be at the hospital by 11:50 for check-in/registration.

We got here about 11:50 and checked in. We were then sent to the registration area to fill out and sign a bunch of paperwork.  We were then told to wait for the nurse to call us back to the pre-op area. We didn't wait long before he came and got us. We were taken back where they did his height and weight, gave him clothes to change into, and took his vitals. We were taken to a curtained area to wait our turn to speak with a nurse, the surgeon and the anesthesiologist prior to the surgery. Not too long after we got there someone came and told us the doctor had an emergency surgery so we were going to be pushed back about an hour.  We used the extra time to head over and register for our room at the Ronald McDonald house.  Shad thought it was a pretty cool place...too bad he will never get to stay there.  

When we got back we waited for about 15 minutes and then we were called back to pre-op again. They told us to go ahead and change Shad's clothes so he would be ready. He looked pretty cute.

Shortly after he changed the surgeon came to check in with us.  He was slightly friendlier than he was last time and actually spoke to Shad this time around which was nice.  The anesthesiologist came and checked in next.  Then the nurse that would be with him for the operation part came and talked to us for a while.  Once it was time to take him back she told us to give him a kiss, and she would take him from there.  He was a bit nervous, and while hugging me held on extra tights for some extra time, but once he let go he was ready to go.  She took him back through the double doors, and he stopped for a minute, but then continued on.  Trevor and I went to get something to eat, and were gone about half an hour.  As we walked back into the building the pager we had buzzed, and a nurse was waiting for us at the desk.  She said that the surgery was done, and we could follow her.  She took us to a little room and told us the surgeon would be in to talk to us shortly.  Apparently they come in and talk to the parents after the surgery to let them know how it went, and answer any questions.  We waited about 45 minutes, and the surgeon never came.  Finally Trevor went out and asked if we were still supposed to be waiting or what.  The lady at the desk said she would check and a minute or two later the nurse came back and said the surgeon was finishing some things in the computer, and would be right in.  We waited about 25 minutes longer before a PACU nurse came in and told us that the surgeon had forgotten to talk to us and was in his next surgery already, but that Shad was awake (and had been for awhile), and so she guessed ONE of us could go and be with him while the other waited for the surgeon.  I walked into the PACU and Shad immediately asked where daddy was.  I said only one person was allowed at a time, and this is the face that he made.  He wasn't too happy that only one of us could be back there at a time.  They said it was policy because there was only enough room for one, but there was plenty of room.

Trevor texted me shortly after that and said the surgeon had come in to see him, and it was a bit pointless (especially after all that waiting).  We spent the next almost 5 hours switching off back and forth while waiting for a room on the hem/onc floor.  Finally, about 9:00 Trevor came and got me and told me to just come back with him and Shad because all the other people back there had two people with them.  

About half an hour later we were finally taken to our room where we were able to get situated and go to bed.  It was a long somewhat frustrating day, but it ended with smiles, and I guess that is all that really matters.

And so it begins...

We met with the new oncologist at Rady Children's Hospital on Tuesday of last week.  It was interesting, and overwhelming, and good, and stressful, and hopeful and so many other things all rolled into one.  We were told to arrive 30 minutes early, and allowed even more time because we weren't sure what parking would be like, and exactly where the office was.  We ended up waiting about 45 minutes because we were so early.  There was a play area outside that Shad could see, but the doors were locked because it had been rainy earlier in the day, so he couldn't go out.  He pulled up chairs for him and giraffe, and sat at the window looking out.  It was pretty cute.

We did some enrollment paper work, and got him all registered in the system.  We read some books, and talked about what we were going to be doing with the new doctor.  Grandma Kitty was in town, and came to the appointment to help with Shad while we met with the doctors.  It was nice to have her there and she helped keep him calm and distracted in the waiting area.

When we were called back they took his height and weight and asked a few questions about his eating habits.  We were then taken to an exam room to wait for the doctor.  The nurse asked a few more questions and filled in some more information on the computer.  While she was doing that Shad started complaining about being starving, and soooo thirsty etc.  We told him that we would get something after we were done at the doctor.  The nurse finished up and said that she would bring him back a drink.  She came back with a whole bag of snacks that had been donated.  There was an applesauce, a bottle of water, trail mix, crackers and few other things.  He was in heaven.

After waiting a little bit longer the doctor came in and met with us.  She clarified a lot of background information about his previous treatment.  She examined Shad and then we were able to let him go out with grandma so we could talk to the doctor without keeping him entertained as well.  She gave us a lot of information about the plan for the stem cell harvesting and briefly discussed the later process of the high dose chemo and stem cell recovery.

The plan right now is to first place an apheresis catheter during a short surgery.  The same day that the catheter is placed he will be admitted to the hospital to start a round of regular chemo (Taxol and Ifosfamide).  As he recovers from that he will have his blood counts checked daily or every other day. When they declare it the right time he will have his stem cells harvested which will be about a day and a half in the hospital.  This will probably be hard for him because he will be hooked up to the machine that pulls his blood out, separates the stem cells, and puts them back in for anywhere from 4 to 8 hours. He will not be allowed to move around or do much during this time, which should be interesting.  This process will be repeated as necessary to harvest enough stem cells for the next part.

Once they have enough stem cells they will prepare for the high dose chemo.  He will have 2 or possibly 3 rounds of that.  Once he has that he will be given the stem cells to help him recover more quickly.  These will be at least 3 week hospital stays, with a lot of restrictions even at home.  We will find out a lot more about this as we go along I am sure.

I am a little bit stressed about not fully understanding all the restrictions and other things that will go into the recovery, but I feel like the doctor is trying to take things step by step with us.  The next time we meet with her I will definitely have a lot more questions to ask her.