Frustrations

There is never a dull moment with our relationship with Nemours. :) This week we will have been there three days in a row! On Tuesday William had an appointment with Cardiology for an Echo. He has a heart murmur and our current pediatrician (we've been with her for nearly three years) had never heard it before. I assured her what we were told when William was an infant that it was an innocent murmur. We even had his heart looked at and all four chambers were present and functioning properly. Since she had never heard the murmur and his heart has not been looked at other than in utero she wanted to make sure for herself and scheduled an echo. We were not worried at all. In fact I didn't even tell most of my family because I didn't want anyone to make a big deal of it. (My mother is going to kill me when she reads this! Love you, Mom. :)) When I say that we didn't make a big deal of it, I didn't even tell William he had to do it until the day before and I didn't hire a babysitter. Brian had to go to the hospital on Tuesday anyway for bloodwork. As predicted William's Echo was super fast and easy. The kids watched Diego while the tech performed the ultrasound. When we were finished with Cardiology we went down to the lab and had Brian's blood drawn for his counts/labs for chemo the next day. We got to Nemours at 8:45 and we were walking to our van ready to leave at 9:55. Easy, peasy. The only drama of the day was William needing Daddy to overly reassure him about how brave he was at his appointment. Again, he is just looking to make sure we give him the same level of attention that we give Brian. Fred's boss has been in town this week and we knew that Fred would not be able to go to both appointments, so he didn't go to William's. We didn't tell William that Daddy chose chemo over an uneventful 25 min. Echo. William would not understand. We just told William that Daddy's boss wouldn't let him come, but Daddy wanted to be there. We try to accommodate and reassure knowing that Brian being on chemo affects all the kids. But, I drew the line at William acting like it hurt and he was still in pain later that evening when recounting the days events to Daddy. When I told William that he was telling a story, that it didn't hurt and in fact he had already told me the worst part was he didn't like the gel, he got a sheepish grin and admitted that he was exaggerating for some attention. We smothered him with hugs and tickles and all was OK. I just like to keep a record for our family of how there is a ripple effect, it's not just Brian.
   So, Wednesday we get to chemo at 10:30 only to find out that our appointment was actually at 10:00. That has not happened, at all, in our almost two year relationship with Nemours. And we have FREQUENT appointments. You would think that they would let that miscommunication on appointment time slide because there have been plenty of times we have had to wait upwards of an hour on them. Plus, it wasn't like we were running late to an appointment and didn't call. We thought our appointment was at 10:30. You would think it would be no be deal. NOPE. The lady at the desk in the lobby said that the oncology floor instructed us to come back at 1:00 because we missed our appointment and the doctor said he wouldn't see us now. You can imagine that our blood pressure increased rapidly. Remember that Fred's boss was in town. He couldn't come back at one, and our helper for the other three kids was available in the morning, as scheduled, and not later at one. Also, Brian already had his numbing cream on his port. That in itself is a big deal. The poor boy HATES getting it put on. We grease him up with Lidocaine then put Glad Press'n Seal over the cream. When he has press'n seal on he will not use his right arm. He acts paralyzed. Brian will probably always hate press n seal and will probably not allow his future wife to have it in their house. Anyway, I digress. It was a big deal that they were turning us away. Fred called up to the fifth floor and talked to the receptionist (instead of relaying messages through the lobby receptionist like we had been doing). The explanation she gave was that there would not be a nurse there to take care of Brian. That didn't add up because we were suppose to be there during that time anyway. Was he not going to have someone looking after him today anyway?! Brian's infusion takes a little over an hour. We were thirty minutes late.
    She told us to come up to the fifth floor and we could talk to the doctor, but that they would not give Brian his chemo. When we got to the fifth floor we had calmed down and bit and we were praying that Fred would be able to communicate effectively without loosing his cool. Our regular nurse checked Brian in doing his height, weight, blood pressure, temperature, etc and Fred struck up a conversation about us being told we couldn't have chemo until one because we missed our appointment. She very calmly stated that the nursing staff had a mandatory off site meeting at noon and had to have the floor cleared by 11:30 so they could leave and make it to the meeting on time. Both Fred and I looked at each other and said, "Why on earth weren't we told that in the first place!! That makes total sense and is different than being "punished" for missing an appointment because of a mix up over time." Even the nurse was a bit disturbed by the unnecessary drama.
    All that to say that we were back at Nemours this AM for chemo. The entire family went and Brian did great. Three days in a row at Nemours...

Here are the kids in front of Nemours on Tuesday before William's Echo and Brian's bloodwork.

Brian playing in the train in the cardiology waiting area. He used to ask to play on the train, but they do not have one in the oncology waiting area.

Cute Kids

Some Pics

BEWARE. LOTS OF PICTURES. Grandmas and Aunts will love it.  :-)

Last week was a chemo week. It was also William's sixth birthday which includes a well child check up at the pediatrician. I didn't do a good job scheduling these two doctor visits on the same day as I only had enough time to make it from one appointment to the other. Since I wanted to ask our Pediatrician a question about Olivia's eyes, Livi had to come along too. That meant I would be getting a baby sitter for just Ansley, the seven year old. I wasn't going to do that, so all four kids went to chemo this week. It was quite an adventure. (Typically they discourage siblings coming to chemo. For obvious reasons like germs, crowd control and noise.)

 Since we were at the clinic during lunch time the floor was empty and quiet, except for our gang and a couple nurses. After Brian was accessed (Which was a lot more difficult than normal. We had to restrain him and he screamed and cried.) we went out to the play room and attempted to turn the play station on for the boys.

We couldn't figure it out and there was no one around to help.

The kids were loosing patience.

We moved on to checking out the book shelf.

We ended up watching a VHS of Air Bud in the small examination room. The kids couldn't have cared less about the movie. After the initial "Hey, that looks like Eva!" no one cared about the movie. We are thankful for iPads, Blackberry's and Droid cell phones. I am not sure Brian would be able to make it through a chemo appointment without Angry Birds. Notice his Angry Birds stuffed animal a couple of pictures up. William got a blue one from Aunt Jess and Uncle Matt for his birthday and Brian got a yellow one just because. I also made a trip to Walgreens before William's appointment and let each child pick out candy of their choice. IF they obeyed for W's appointment they got their candy. Some call it bribery, I call it incentive. :) I believe Olivia is on her second or third sucker of the day in this picture.

 Please pray for Brian. He is starting to put together that his 5th birthday is right around the corner and chemo will NOT be ending anytime soon. He's been praying for months that he would have "no more chemo when I am five".

  Brian also has some bumps on his skin that look suspicious. They look very similar to the ones on his scalp that he has had at diagnosis and recurrence. We haven't been able to see Brian's regular doctor the last two visits and will not get to see him in a couple of weeks. SO, in five weeks we are hoping to see his regular oncologist and discuss the possibility of a biopsy to figure out if they are LCH or not. If he is getting these growths while on treatment it is a bad sign. We would have to mix his treatment plan up a bit. Please just be in prayer for little Brian and that the bumps will go away!

Grandma Schreiber sent the boys their birthday presents. Since mommy suspected what they would be there was no way we were going to let William open his and then tell Brian he had to wait six weeks and *smile* maybe you'll get some too. I know some parents would say that kids need to learn that their sibling's birthday is not about them, but that is not what this was about. If you don't have a kid on chemo you can try to imagine, but you can't just understand the emotional ups and downs he goes through. He's not like a regular four year old. The things he thinks about, that he's afraid of, and what he can do are just not the same. In fact, we had William's birthday party at a swim park. We had a three hour session with slides, fountains of water shooting up and three different pools. Our three other kids were loving every fun filled minute and did not want to leave. Brian spent the last hour sitting at the picnic table with Daddy because he was tired and ready to go home. There are some things that we just don't put our sweet Brian through. Making him wait six weeks for sheets that he wanted while watching his brother snuggle up in them was NOT something we were going to do.

William and Brian were SUPER excited about their Star Wars sheets. Thank you, Grandpa and Grandma.

This picture is for Pastor Clif. Brian is listening to your sermons. We went to Panama City last weekend and Brian found a stack of bricks in Bigdaddy's back yard. He started picking them up and moving them over by the fence, stacking them up. When I asked him what he was doing he replied, "rebuilding the wall. Like Nehemiah." I was super proud and ran in to get my phone to take a picture. Brian might be the cutest almost five year old in the world!!!