Aug 25 Update

We had chemo today and got to see Dr. Schwartz, our doctor that we've seen the most of since our original doctor moved to Texas. Dr. Schwartz was the one that mentioned he wanted to keep an eye on some suspicious lesions on Brian's skin. Then we didn't get to see him for about four or five visits. Since our visits are three weeks apart it has been a very long time since we've seen Dr. Schwartz. Anyway, today he said the lesions look the same as he remembers and that is a good sign. For right now we are thinking that everything is going well with Brian's treatment. Brian is super brave on treatment days and takes his medicine with minimal resistance. We are very proud of our big boy. We got an order to get a skeletal survey or bone scan. I can't remember which. We will update after we do that and get results. Thank you for continuing to pray for our family.

BRIAN IS FIVE

Brain turned FIVE years old today. He is such a sweet boy. We had a great time celebrating Brian in our home with some "boy" friends.

chemo 8-3-11

We are at chemo today. The entire gang came along. Brian is doing well other than he is getting a little cold and sniffles.

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!!!

A Peek Into Fred's Heart

A Dad's View

The last couple of years have been a whirlwind in our lives and I feel like I can finally discuss some of the feelings and thoughts I have had over the past two years.  Brian is an awesome trooper that taught me a tremendous amount through this test. God has used this time to make my life radically different than it was.

So, we go in to the Dr.and he gives us the run down of what is going on inside little Brians body and what the "roadmap" of treatment was.  We had so many questions unanswered as we were whisked away to the oncology wing of Sacred Heart.  Is this Cancer?  Is this multi system and if it is, what will his treatment be?  What is chemotherapy like and what is life going to be like?  We had no idea so I naturally went to tough guy trooper that has to be strong and power through this.  Now inside I was as scared as Brian and Carrie and extremely uncertain of what to do.  On brief occasions I would share with Carrie how I felt but it was few and far between. 

So by Friday of the first week we were ready for the first treatment.  The nurse walks in wearing a hazmat suit because if the Vinblastine gets on her skin it will burn her.  HE IS THREE!!! What are we doing to him??  Can you think of the apprehension and destress this causes?  Tough.  So we do it and he responds well. We get to go home but not before the nurse said "maybe this can be his room when he has to come back?"   Huh?  We'll be back for sure?  How often and why?  Remember we have been seen by a slew of Dr's and nurses and performed 20 different tests.  We finally got home and searched online and talked it out and this is what we had to do.  So I attempted to show no weakness and just be strong becuase we have no choice.  The first time we go to treatment I have to physically restrain him as he yells through tears of fear and anger "daddy let me go, don't hold me down!"  Choking back tears I just say "Brian we have to do this Daddy loves you but we have to do this."  Wow!  God must not have understood how hard this was to watch your son go through this.  At this point in treatment I was angry and failed to realize that He knew exactly what it was like but infinitely worse.  I hated that God was sovereign because His sovereignty was my son, my wife and my family's pain.  Brian did eventually fight less as he became more accustomed to the process and his body got a little weaker, so there was no real joy in that.   

I reacted like any rational person would I escaped through every means possible to the detriment of my family and my body.  I did not have a good coping mechanism and it was killing me that Brian would not speak with me after treatments. He always told Carrie "I love you Mommy" and would make sure I heard and that it was obvious he was not saying it to me.  Then bills I couldn't pay started coming in, bosses that wanted to fire me came in to being and the economy is awful.  It all added up to a disaster waiting to happen.  While I am here I will say a few things that are important to remember.  As with most childhood cancer LCH has a great prognosis and is rarely fatal.  Good news, but the process is brutal with 3-4 different dr visits a week.  It was difficult and we did it, but I could not handle it and I proved that at least once a week by blowing off steam in innappropriate ways.

We got to the end of the first round of treatment. We thought it was gone and that we were on the path to freedom.  Yes, there were multiple tests to be run every so often and numerous Dr. visits but we could manage that.  God was not done with us. Brian developed symptoms again inside of 3 months.  Now we had to explain to a now 4 year old he had to go get another port, he had to have more chemo and he had a bunch more dr visits.  I remember going into his room and him just very honestly telling me how angry he was at me that I had to hold him down and just how scared that made him.  It was like a knife ripping into my chest cavity and ripping out my heart.  I had responded to his anger with anger and we were now at odds but I loved him so very much and was dying inside. 

All of this brought up some painful memories of my childhood that had not been dealt with.  I ran further and faster from God because He was and is sovereign over all these situations.  His ways are higher than ours and His thoughts are higher than our thoughts.  We would never chose to hold down our son and watch them put a needle in him and see his cries for release and having the ability to provide the release but not offer it, would we?  Thankfully God did, but I was not there yet.  So it finally came to a head one night and some amazing people like my wife, our pastor and my in-laws came alongside me and I finally admitted I could not handle this.  It was WAY too much. 

I turned towards God, softened my approach towards Brian and just prayed.  God's sovereignty brought me to this point were I acknowledge my need for Him in every matter of my life.  The goal of God's sovereignty is not my happiness here on this earth but rather an eternal life with Him. It is painful every 3rd Wednesday to take Brian to Chemo. Just two nights ago I wept as I prayed for Brian only after he mentioned how his treatment was impacting him.  He is 4 and has prayed for months that he will be off chemo by the time he is five.  He won't be, in fact he will be on treatment for 8-9 more months. (By the way if you know me just write that down. Don't ask me if he is still on treatment or almost done.  It seems like you don't care if you can't remember that.)  All that being said I am right were I need to be...on my knees in front of God begging for Brian to understand what is going on and still love God and his daddy.  

Saying Goodbye

Brian's very special friend, Ellie, is moving to "Tucky" today. We are sad. We got to spend their last night here all together at a church picnic at a park on the water. It was very nice. When it was time to say good bye there were quite a few tears. There may have been some promises made to each child in an attempt to cheer them up (and maybe even a slushy from the gas station).   

 These two sweet friends will be Skyping each other next week!

After our friends left we walked down by the water and looked at some crabs. The kids looked so cute that I had to snap a few pictures with my phone. They are adorable.

Chemo next Wednesday. Please keep praying for our Brian.

Keeping On

No new from us lately because PRAISE THE LORD nothing to report. Brian is doing well. He had five weeks of weekly chemo (remember that meant we were at the hospital two days a week) and now has moved to a every three week schedule. He has settled nicely in the routine of going to chemo every three weeks. That doesn't mean that he is "settled" with having to go to chemo. Every single time we drive by the hospital Brian tenses up and you can hear the tension and worry in his voice when he says, "Why are we going this way, Mommy? I don't have to go to the doctor today, do I, Mommy?"
   It makes me sad for him. Other things that are kinda sad...


getting this letter in the mail. Notice it says Childhood Cancer Research Network Participant. Yes, thanks for reminding me.

During our "off" weeks of chemo we almost feel normal. I guess chemo is our normal, but you know what I mean. Getting mail about childhood cancer research is really depressing. It's a reminder that we have a child with a serious illness. He is not like a "normal" four year old. In February I took Olivia to the pediatrician for some bumps on her skin. I was concerned that she had LCH because, at that time, she was the exact same age as Brian was when he was initially diagnosed. Our pediatrician reassured me that Olivia just had some dry skin and needed lotion daily, but she totally understood my worries because of what we have experienced with Brian. Some of struggles that come along with what we are dealing with is not seen or understood by those that just see us from a distance. Sometimes we can't even explain with words what we are going through. You kinda have to live it to know. That is what we found so encouraging about meeting the other families back in December at the Wings of Hope Christmas party. We didn't have to try to explain what we are going through, they knew. Of course at that same party we had someone ask if Brian had picked out his Make a Wish dream. I instantly thought, "oh, we don't qualify for that." (But he does.) It's crazy, we go from identifying to denial.

We have gotten mighty comfortable with our role and relationship with the hospital. A few weeks ago I took Brian in for his bloodwork the day before chemo. There was a new tech in lab (it had been a couple of weeks since we had been there because we had just moved to our new three week schedule) and since I am experienced I started to notice she wasn't doing things the way we always do.When the receptionist says "Hi, Carrie, how's Brian doing, we didn't see you the last two weeks, is everything OK?" I think I can say we come here often enough that I know the drill. So of course I say something to the tech. I let her know that we use the "butterfly" (I am not a medical professional, just the mommy so I know the terms as they are relayed to a four year old) and fill two separate tubes of blood. The tech assured me that the needle was the same size and she knew what she was doing. She then drew one syringe of blood and said done. Feeling like that just couldn't be it, I again questioned. Annoyed with me being "that woman" the tech looked at me and said, "YES, that is all I need, you're done."

Wouldn't you know not three hours later the lab calls and tells me I have to bring Brian back in because they didn't get enough blood to do all the tests. I asked if they had run the test to check his ANC levels. I know that this is what they check to see if Brian's counts are OK to receive chemo the next day. She said yes so I knew that we had what we needed for the next day and that we were going to be back in the lab three weeks later for all the other bloodwork. I then told her that we would not be coming back in. She then said we would have to come first thing in the morning. I informed her we would be at chemo, and that  we would not be coming back in until three weeks from then. 

Other news, Brian's best buddy, Ellie, is moving away and that is kinda sad. B and Ellie had a great play day together last week and we are going to squeeze in as many as we can during the next few weeks.  

 Please keep praying for Brian as he has chemo followed by five days of steriods every three weeks through next March. We will do our best to keep you all updated as much as possible. Sorry for the extended absence this past month.

Getting Creative

Brian, Ansley and William created a "Rain Forest Cafe" in Brian's bed. They are wild and crazy!

Chemo 4-6-11

Today while we were at chemo I heard another little boy out in the play area so I wanted Brian to go out see him. It's been important to Brian to see that he is not he only little boy that has to go through all this. While in the play area Brian colored an Easter egg on a paper plate to hang up on the window decorating the room.  

 The social worker was giving out gifts today and she gave Brian a bear from the American Cancer Society. Its name is Will Hugyou. Brian really liked his bear and told us that Will Hugyou will be good friends with Doctor Bear.

The New Plan, part two

Brian is such a little trooper. He certainly has a big helping of God's grace on him. He just handles things so well for a little four year old. That's not to say that he doesn't have his moments of total meltdown, but he is really great about all this. It's a lot for a little guy to handle.
   Last week he received his first infusion of "the new plan" and took five days of steroids. He threw up several times, had diarrhea, spit out his medicine and didn't want to take it. We noticed an increase in his emotional outbursts and a decrease in his energy level.
   Last week at his appointment we also learned that Nemours has a new procedure for chemo. Brian has to get his blood work to check his counts the day before chemo. We were told that they were wasting alot of drugs from kids with low counts (b/c if counts are low they can't receive their meds). In order to prevent wasted chemo meds we now have to get Brian's blood drawn the day before his drugs are to be prepared and administered. Sounds great for not wasting meds, but for a little four year old it means going to the hospital twice a week and getting stuck twice instead of once. It was not fun telling Brian we had to do that today. He cried and announced how scared he was. It took Mommy and two nurses to hold him still to get his blood drawn. We could have used his port but it really was easier to just draw it out of his arm. The entire experience was not pleasant. Here's a picture of Brian waiting to get his blood drawn.

We had CC today so one of our friends took Ansley and William home with them after school and then met us at ballet at 4:00. I only had Olivia with me for B's bloodwork. Olivia still naps and she was especially tired after our morning at school. Instead of trying to carry a tired Olivia and hold a scared boy that needed to be comforted, I used our double stroller that we haven't used out and about in quite some time. Maybe even more than a year. Anyway, pulling the stroller out was super exciting to Olivia and she kept buckling herself in and saying "I'm locked. I'm locked...please let me be free". She was saying it like a princess that needed to be rescued. Brian was not amused and it didn't distract him one bit.
     While we were in the car on the way to the hospital I asked Brian what I could do for him. I told him that I wanted to help him not be so scared and then tried to encourage him that we thought he was doing an awesome job being so brave and enduring what alot of people couldn't handle. He said that I could pray for him and hold him and snuggle him. (SO SWEET!) He then told Olivia she should pray for him too. So as we are leaving the hospital Brian turns to Olivia and gets onto her for her "rescue a locked princess" dramactic play. He says "OLIVIA! I told you to pray for me and you didn't!!!" She ever so sweetly responds with, "I did, in the car. Thank you God that Brian doesn't have chemo when he is five."
  We surely pray everyday that when Brian finishes this round of chemo when he is five and a half that he will be done for life with NO long term side effects.
  

On a happy note, Brian loved his happy meal toy from today's lunch.

Every little boy loves a super hero. Here is Brian and Robin. Thank you McDonalds for 20 minutes of smiles.

The New Plan

We heard from our Hem/Onc doctor and have a new course of treatment. Starting this Wednesday (3/23/11) we will go back to the drug Vinblastine with a steroid combination. We are switching back to the original steroid that Brian took during his first round of chemo. (Sept 2009-April 2010) The steroid that he took from Sept 2010- Dec. 2010 has too many long term side effects that we are not interested in. Apparently it was a stronger steroid. The doctor told us that he was switchingback to Prednisone because he didn't want Brian to need a hip replacement in a few years as the stronger steroid causes bone issues. Umm....YEAH!
   Instead of doing the initial six week induction period for a third time in Brian's young life the doctor modified it. Brian will have four weeks of weekly infusions of Vinblatine with steroids on week one and week three. Then he will move to a every three week infusion followed by five days of steroids. He will have to do this for one year.
  This is a lot. The infusions are not fun. Getting Brian accessed has become more of a struggle. He doesn't like "being hooked up to a machine" as he says. And he isn't too fond of going to the doctor at all. This past Thursday the kids and I had a picnic outside and we saw a helicopter flying. We live near Sacred Heart and the airport. Brian has seen Life Flight land on the roof at Sacred while we were at one of our appointments. When one of the kids pointed out the helicopter Brian smile mischievously and stated, "I hope it crushes my doctor." He knows that the helicopters land at his doctors office and he thought if it crushes the building then he wouldn't have to go to chemo anymore.
   Please keep our family in your prayers. We pray that we are a testimony of God's faithfulness and reveal His glory to the Pediatric Hematology/Oncology doctors and nurses. Well, and the other six thousand nurses, specialist and techs we come in contact with.  :)

And lastly, Brian will have to have a chest X-ray this week because he STILL has a nasty cough from when he was sick in January.

Some News

Just had to share some cute pictures we have taken recently. We have lots of news to share. But first, aren't  our boys adorable?! They are best buds. Super cute.

  Our family has been through some pet trauma the last year. Fred and I have had two dogs since before the kids were born. Our kids are used to animals being around and love it. Well, last May our mutt (which the vet said looked like a Redbone Coonhound) killed our cat. It was pretty aggressive so we put him down. (He had started to turn on our golden and attack her too. It wasn't an isolated one time act of aggression.) Three months later Ansley found our Golden Retriever dead in the back yard. She must have died of a lonely heart because there was nothing wrong with her. (Fred teased that Hawn had the best three months of her life since Ansley was born and the dogs took back burner.) We went from two dogs and a cat to no animals in a matter of months. We have been wanting to get the kids a new golden but quite frankly they were too pricey. Fred and I prayed about it, thought about it and talked it over and over and over. Finally we decided to do it. When I called the breeder to discuss coming and picking out a pup from the litter she opened the conversation with "I'll be completely honest. We are moving in a week and I have two dogs left that I haven't sold. I have to get rid of them. I will take whatever you can give me." What a blessing!!! Every time we are patient and cover an issue in prayer God blesses us. We are happy to announce the newest addition to our family...Eva Schreiber.

Brian picked out her name (and everyone agreed) after his beloved Wall E movie. Eva is our baby Golden Retriever. We are super excited about our new girl. All four kids are eager to participate in the care and training of our new dog.

   Mr. Brian had an appointment last Thursday with the Hem./Onc. doctor. It was a regularly scheduled infusion, but we had planned to address the Histio symptoms that are not going away. More info coming but as of right now we know that the doctor is going to be changing Brian's treatment. The meds he is taking are not working. Our doctor is going to contact us in a week after he has the opportunity to discuss Brian's case with one of the leading doctors in Histio research and treatment. Our doctor has e-mailed with this other doctor before. We are very thankful for the thought, time and concern our Hem/Onc doctor puts into Brian's case. Please pray as we go through these changes. What we do know is that Brian will have treatment for one full year. The clock starts over now. He will NOT have his port out by five.

BB the brave

I am just dumping some pictures from my phone. This one is of Brian getting his blood pressure taken on his arm instead of the leg. He's a brave big boy. Funny story...Back in January we went to the pediatrician because Ansley was sick. They weighed her and checked her height, then we headed to the room. Brian announced, "Wait, you forgot to take her blood pressure!"

It went well

When they started Brian's IVIG the nurse also gave him some Tylenol and Benadryl. After picking at his lunch a bit Brian fell asleep and slept through most of the afternoon. He did awesome. Brian is such a trooper. We got home around dinner time and Brian was totally normal. He even made it to Wed night church. On Thursday night he did wake up throwing up, but we think that was because the meds he was given broke up all the mucas in his head and it went into his stomach causing him to throw up. He has almost rid himself of that nasty cough he's been battling for about five weeks. He's on the mend. :)

and we have begun

We arrived at Nemours at 8:30 AM for Brian to be accessed. Then we waited for a while for a room to be ready at the hospital. We moved over to hospital around 9:45 ish and ended up in a regular peds room because every single oncology bed is full. That's sad. I think our oncology wing has nine rooms. The two times we've been admitted since our journey began there have never been more than a couple of kids. Now, they are full. Fred and I are grateful we are just here for the day. After a couple hours in our room we are just now a little before noon getting started. I remembered this thing being a crazy long procedure but apparently the crazy long part is not the actual administering of the IVIG but the hospital side of getting it set up and then discharging us.
 Right now Brian is playing his Leapster and Daddy is working from his laptop (comfortably from the bed since B is still scared if it.)  We should be done in four hours.

hello

You've got to love technology. I am adding pictures to the blog from my phone. So fun. Brian and Daddy are watching something on Daddy's laptop. good times. 

at hospital

On Monday we got a call from Nemours saying that Brian's immunoglobin levels were low and we had to go back to the hospital for another IVIG. We are at Sacred today for our second IVIG. Brian did excellent back in December and we are praying this one goes just as well. Sorry this is short and not punctuated correctly and contains mispellings. I am on my phone and this is somewhat of a challenge.

Feb Update

little disclaimer...I am sick and have not edited this. I think I ramble...(no surprise)

Brian went to Nemours yesterday for his regular monthly infusion. He is still taking his oral meds daily. Yesterday we were able to see Brian's regular Hemotologist/Oncologist. We discussed our concerns with him about Brian's symptoms and our fear that the oral meds Brian is currently taking are not quite enough to keep symptoms away. We know that Vinblastine and steroids work for Brian so we discussed going back to those meds. Returning to that specific drug and steroid combination could happen a few different ways. We could either do another initial six weeks of weekly infusion and daily steroids followed by the "pulse" of every three weeks of chemo with the following five days of steroids (Exactly like round one of chemo. That was effective at treating the symptoms but didn't quite "kick it". Perhaps a year of treatment verses seven months would work.) Or we could go straight to the pulse. Our other option is to continue with the 6mp (Mercaptopurine) and Methatrexate that we give Brian orally at home with his once a month infusion at the clinic.
   Right now we are waiting one more month to see if Brian's symptoms go away, get worse or remain the same. We (well, really the doctor...) will decided after the March appointment what route we will go. Obviously the most convenient treatment for Brian and our family is to have him go once a month to the clinic. Plus his energy level and behavior is very normal while on the drugs he is currently taking. It makes me sad to think about going back to weekly chemo at the clinic with steroids. Brian becomes a fixture on the couch. He sleeps ALOT and doesn't have energy to do anything. AT ALL. However, both Fred and I have said it before, we want to take care of this now. Brian prays every day to have "no more chemo when I am 5".  We would rather have a year of "the bad" then keep revisiting chemo drug combinations every year because of recurrence. Brian really wants his port out because he knows that no port means no more chemo. Having the first one removed only to have a second one put back in five months later was TOUGH. Brian sobbed. We sobbed. It was really a blow. Now, Fred and I don't want to make the decision to remove the second one until we know that the meds Brian is taking have done their job. While there is no 100% guarantee, we will be more cautious this second go around. Brian would not deal well with having a third port put in. Anyway, I digress. I guess I am just putting all the thoughts that are swirling around in my head out there. We are kinda thinking that we would rather be more aggressive and prayerfully have Brian's port out by five or very soon thereafter. If we stick with the drugs we are using now the port removal is a possibility, but we are hesitant to take it out given Brian's current symptoms. If he moves back to Vinblastine he will not be having his port out as that is how they administer that drug. Anyway...
    Please pray that God would give the doctor wisdom and that we would have a peace about what route to take. Obviously we just want to be DONE with chemo, ports and hospitals.
  Just another peak into some hospital drama. When I took Brian to the ER on Jan 18 Fred was in Atlanta for work. I called him crying saying they were going to admit us because of Brian's fever and he was neutropenic. (As I had been told by the nurse attending to us.) The nurse came back in the room and said, "You are lucky, Mama, your doctor said you could go home and follow up in the morning. I had all your admissions paper work ready." So, yesterday at our appointment the doctor was going over Brian's labs from the ER and said his counts were low, but he wasn't neutropenic. I immediately told him what the nurse said, etc.. Come to find out according to adult patients Brian's counts were neutropenic, but for a child he was OK. You would think that the Pediatric ER nurse would be all over that, but apparently she didn't remember the difference between child/adult numbers. Our Hem/Onc nurse said she was not surprised and gave us the speech to give during any future ER visits. Our nurse also told me what size needle we use to access Brian's port b/c the ER nurse wasn't sure. Before accessing Brian in the ER the nurse asked me what size to get and came in and out of the room about five times looking at her tray and coming back with something new. She ended up using too large of a needle. It left a mark. It kinda looks like a hole in an ear after you've taken an earring out and let it grow back together.  And people wander why we are skiddish about taking Brian away from his doctor. We can't even leave the fifth floor of the same hospital without some sort of drama. He's four. Keeping things predictable and the same makes a huge difference in how he responds to the visit.