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.

Still Here

Hello to all that are still following the blog. Thank you. We are still here but we are very busy. I have learned to let unimportant things slip away and focus on what matters. We have been pouring ourselves into our children. It's tiring to be good parent. :)  The blog has been ignored so I will try to update as best as I can. I will warn you that I will probably ramble. For those of you that don't want the long version: Brian is still taking oral chemo drugs daily and goes to the clinic for an infusion once a month. He had an ER visit almost two weeks ago for a 102 fever. (That of course would be the week Fred had to be in Atlanta for work. Life is stressful. Thank you Julie for being willing to sit with the other three until midnight. We LOVE you! ) We knew he just had the bug all the other kids took their turn getting, but since he has a port any fever over 100.5 has to be reported to the hem/onc doctor. (We are not allowed to give him Tylenol.) The doctor sent us to the ER and Brian had three hours of an antibiotic infusion and a chest X ray. His lab work came back with his counts low so the ER doctor was going to admit us, but THANK THE LORD he called our Oncologist who said we could be released and follow up with him in the morning a few hours later. There's our medical update. :)
Now, life...
    Brian is doing well, we think. Fred and I are a little concerned as we have noticed some of Brian's original symptoms presenting themselves again. We discussed this with the doctor we saw in Jan, and he did some extra blood work to check Brian's lipils or lipids (OK, something, but I'm not sure if that's correct...I will check and get back to you). He said all that was normal. This was our first time seeing this doctor and we most likely will not see him again. Brian is not his patient so he wasn't as attentive as our regular doctor. I don't mean to sound hateful, but we noticed a difference in level of care. We don't meet with Brian's oncologist until Feb. 11. We will discuss our concerns with him then. We are praying that everything will be OK and that we continue with the treatment plan for the full year as it was laid out for us. It does kind of unnerve us that the end of November into December Brian went without treatment for three weeks (because his counts were so low) and he started presenting symptoms again. They have not gone away. This timing coincided with the change of drugs in Brian's treatment plan. Since I am not a doctor I don't want to diagnose but it seems like the new drugs are not as effective as the infusions he was receiving. (Vinblastine) Of course he took Vinblastine for the entire term of treatment last time he was on chemo and he had a recurrence within four months of completing that cycle. The thought this time around was that Brian needed a full year of chemo and not just seven months. We are praying that is so. We are praying this round of chemo gets it.
      I haven't posted about the Wings of Hope Christmas party yet, but I wanted to share something that has stuck with me and Fred since then. We didn't join or participate in WOH last year because we didn't want to be "one of those families" with a seriously ill child. By the second round of chemo we decided, for Brian, it was a good idea to see other little kids (outside of the hospital) that have to go through the things he does. We signed up and we went. I teared up as we moved around the room meeting people, realizing that we belonged there. It was sad. (Ask anyone that knows me well, I rarely cry.) One of the things that Fred and I had validated is that all these people understand the process. They get it. So often people ask us Brian diagnosis and prognosis and when they hear the prognosis is good it's as if they fail to think about the "getting through it". If you haven't had a child on chemo then you don't understand what all is involved. It's understandable that they mind kinda goes to "Well, that's good. They do chemo for a year and he should respond and be OK. What a blessing it's treatable."  While that is true, we are grateful that there are medicines that have successfully treated Histiocytosis, the process sucks. We are seeing the process take a toll on everyone in our family, not just Brian. Some problems we are currently working on include our seven year old being very perceptive that Brian gets more time and special privileges. She doesn't understand why she doesn't get the same. For example, when Brian was getting infusions of chemo weekly and on steroids he didn't do anything. Literally. Nothing. On the actual day of his infusion he would want pizza and popcorn for dinner. There were some weeks that he wouldn't eat his pizza and he would request to just be on the couch with his popcorn. During that time it was work for him to sit at the dinner table for 45 minutes. We didn't make him. After a few weeks of that Ansley started to state, "I want Chick Fil A for dinner. If Brian gets what he wants I get what I want!" Sometimes we would let her sometimes we would not. Other issues we've had was my time. Back in Oct/Nov/Dec. I was consumed with phone calls, paper work, staying on top of insurance, juggling doctors and appointments, etc.. Naptime became my time to get most of that accomplished because there were just two kids in the background as opposed to four. I would typically let Ansley and William watch a movie, go outside, or play with playdough. I tried to give them something that was a treat during this time. That all sounds lovely and well organized but it didn't always work out so nice. There were plenty of days that I ended up on the phone mid morning plopping all four kids in front of the TV as I battle things out with whatever drama was going in the moment. Not to mention that when I did get a naptime to get these things accomplished Ansley and William would inevitably run in and and want to show me their play dough art, point out a bird in the backyard, etc.. They wanted to continue sharing their life with Mommy. They understood and "got it" when I explained that Mommy has to take care of issues with the doctors, insurance, etc., and I think that they would have been OK had that been the exception, but when Mommy's time was taken up almost daily they got frustrated. They associated that as more attention Brian got. "Everything's about Brian."
   Money was another issue that we had to deal with. I think this was good. Our children have been very blessed in that they don't know what it means to do without. I don't mean that we give them everything they want the second they want it or do they have to have everything, but they don't know what it means to not be able to afford something. If they see a toy they want they assume they will get it for their birthday or Christmas (and they probably will). Since money was/is ALWAYS (and I do mean always...we used to play a game of how many bills will we get today...) flying out the window we started talking to our kids more about budgets, planning, saving and being good stewards. Stuff we should have been doing anyways. We would explain to Ansley that just because we technically have the money for something doesn't mean that you should buy it. We also explained that when Mommy said we don't have the money for that right now it didn't mean we have "NO money" (as Ansley would say), but that we were not going to spend the money that we do have in that way. Again, all good stuff that we should have been teaching already. I think I have to get it into my mind that our kids are getting older and are becoming big kids. We are no longer in the toddler/preschool phase. Our youngest Olivia turns 3 today! By that age Ansley already had two baby brothers. She could run grab a diaper and tell the babysitter where we kept things in our house. Yes, my babies are big and I can no longer have adult conversations around them because they know what I am saying and Ansley can even spell it. Not realizing this earlier I have made comments to people soliciting money that we don't have any to give because we are paying for chemo. Yeah, poor judgement on my part. All Ansley heard is that we don't have money because of Brian.
   I have learn ALOT these last few months. I've made a ton of mistakes, but God is good. His mercies are new every morning. He is faithful and He will use this challenging time for His glory. Our prayer is that we glorify Him. We hope people see that we aim to glorify Him, NOT because we expect Brian to be miraculously healed and our children grow up to be perfect, but that we glorify Him with whatever we have been given. Right now we have been given chemo with our four year old son. Glorifying God sometimes that means looking at our seven year old and saying I messed up and I am sorry.

At Chemo

On Friday Brian had an infusion and some blood drawn for labs. Now that he has his surgery behind him we can move forward and enjoy Brian's new chemo/clinic routine. We go to the clinic once a month for an infusion and labs. At home Brian is taking two different chemo drugs orally. One he takes daily and one is once a week. Brian was thrilled to find out this past Friday that his next clinic appointment (which means getting his port accessed) is not until Jan. 14th.

 On Saturday (Dec 18) our family went to the Gulf Coast Wings of Hope Christmas party. It was such a good experience for Brian to see his two doctors outside of the clinic and hospital. He was really nervous and excited, but it was really good for him because we have heard lots of chatter from him about Dr. Chatch and Dr. Schwartz since yesterday's party.  I will do another post in the next couple of days all about the party and include some pictures. It was a really good experience for our family. It was nice to meet other families that have had a child go through chemo.

Here is a picture of Mommy and Brian from this past Friday. We were in the play area picking out some books to take back to B's room. His monthly infusion is an hour long. It's kinda sad to watch Brian walk with his blue pump. He knows how to move with out getting his tubing tangled. Definitely one of those things I never thought we would have to do.  

Happy!

I could title this THANK YOU AUNT DABNEY or HAPPY BOY!!! Aunt Dabney won favorite person in the world award in Brian's book. She found this Wall E plate and just couldn't wait until Christmas to give it to him. He was one happy boy!

Brian's Surgery

Brian's surgery went very well today. We were thrilled with how great he did waking up from general anesthesia. Typically he wakes up fighting mad trying to pull of any lines that may be connected to him. Today he was crying and upset about his mouth being numb but he did really well after we repeatedly explained that would go away. Brian HATED having to wear the "butterfly and sticker" home the night before surgery. Mommy asked him if she could take a picture so that we could look back one day and say "remember when..." Brian didn't want anyone to look at his port but when Mommy took the picture he was all smiles. He's such a sweet boy. Even as he went in for surgery this morning he was as nervous as could be, but he flashed that smile to anyone that looked his way.

 The reason Brian was accessed the day before surgery was because his wonderful nurse wouldn't be at work at 5:30 AM when we had to arrive for surgery. The Hem/Onc clinic doesn't open until 8. We do not let anyone mess with Brian if they have no idea what they are doing. We've learned from experience that once we leave the fifth floor not too many people are familiar with a pediatric Bardport implanted port. Last year one of Brian's first surgeries left us dumbfounded as the nurse taking care of Brian in recovery asked US what to do and when to administer the Heparin. We looked at each other with total shock in our eyes thinking, "this lady is going to take care of our baby?!" 

  We have just enough experience under our belt that we know that we have options and we don't have to just sit and do what we are told. When it comes to her baby, Mommy will be sure he gets the best care and is not too shy to say to a nurse, "You're not doing that...let's get someone else in here." Mommy knows that we are Brian's best advocates and the only people that know EVERYTHING that Brian has had done or is about to go through. Sometimes it can be so frustrating to see just how little the right hand knows what the left hand is doing. You would think there would be a better internal communication system in the hospital. Anyway, today's experience was not that bad. Brian's nurse in recovery admitted that she didn't know about children's ports and needed to ask someone what to do.She called Brian's nurse on the Hem/Onc floor and got the information (by this time the clinic was open). When she attempted to deaccess the port she forgot to clamp the line and blood came pouring out. Mommy freaked out, as that had never happened before, and was ready to say STOP. The recovery nurse left the room to get more Heparin. During this time Mommy calmed down and Daddy explained why that happened. After a second conversation with Brian's Hem/Onc nurse the recovery nurse attempted to deaccess Brian's port again and did well. It was stressful. That would be the theme of our life right now...stressful.  

B at home last night.

At 5:30 AM we headed to the hospital. Brian's surgery was the first on the books at 7. We passed the time playing with Wall E toys that Mrs. Zimmerman gave Brian. Thank you to the Z family. Brian LOVED LOVED LOVED his gift from you guys. He was upset that Mommy forgot to grab the Wall E comforter to bring with us to the hospital. As soon as we got home he snuggled up with Mommy and all his Wall E toys on the couch under his Wall E comforter. Then when he took a nap on his bed he slept with his Wall E comforter. After his naps the Wall E comforter became a fort with the Chick Fil A box that Bigdaddy sent over with Grandma Hayes.
  Grandma Hayes watched the other three kiddos today and even successfully navigated her way to Pace and back home. She took the kids to their Classical Conversations Christmas party. They were excited that they did not miss out on their party and thrilled to show off Grandma Hayes. They had tons of fun with her today and even convinced her to stop by McDonald's on the way home for some apple dippers. Thank you Grandma Hayes for coming over and taking a day off of work. It was a blessing to us!

Brian's beloved Wall E comforter from the Zimmerman's.

. When we got the mail today Brian received a video from the Tinklenbergs. He and William were excited to watch the Veggie Tales Christmas video while the girls were at ballet with Daddy this afternoon. Thank you to the Tinklenberg family. That was very thoughtful and we have one little four year old that was thrilled to open his own mail.

There are so many wonderful people that have served us, encouraged us, helped us and prayed for us. We appreciate EVERYONE!  A special thank you to the Shanagahan's for dropping by the other day to bring us dinner. Of course they know how tough things have been as Kylee is our wonderful babysitter. She is in our home and has seen Miss Ansley "loose it". Kylee took a verbal lashing from Ansley last week. Kylee is so wonderful to know that Ansley is typically a sweet girl, but she is definitely going through a lot right now. We appreciate how patient Kylee is with our kids.

We REALLY appreciate our CC group. Those wonderful group of ladies have rallied around us and made sure we have a meal every week. It has been such a life saver. Thanks to Joyelle who coordinated that and stays on top of making sure everything is organized well.

The women's ministry at McIlwain gave our kiddos a wonderful gift bag of goodies. All four ripped through the bag like it was Christmas. I am not sure what the favorite gift was as they have enjoyed it all already. Literally, they have played with the play dough; they put the pill things in water to watch them grow into sponge shapes; they have used their snow man cups; and danced in the dark with their glow bracelets. Thank you to everyone that donated something for our little ones. We really appreciate it. We are excited about the pizza gift card too. Mommy wants to say a special thank you to Mrs. Yates who thought to freeze the Christmas Cookies until later when Brian can enjoy them too. It will be a couple of weeks before he can eat a cookie. He now has NO molars in his mouth. He has six teeth across the top and six teeth across the bottom.

Please continue to pray for our family. It is such an encouragement to know that we have a huge army of people in the body of Christ supporting us and coming along side of us as we take this journey.

I am adding this picture later then when the rest of this post was written. When I was getting him ready for bed I noticed his skin was really irritated by the adhesive from the dressing over his port. He has always had sensitive skin, but he really reacted to the bandage this time. I guess because he wore it for 18 hours.

Brian's IVIG

This morning Brian went to the clinic to have his port accessed and labs drawn. From there we walked to our floor in the hospital to be admitted. There are not many perks to being a kid on chemo, but at Sacred the oncology patients have a special unit that is a cut above the normal peds floor. Here is the doorway into the Oncology Unit. Notice the hospital floor in the first picture then you will notice in the following pictures the oncology unit is a bit nicer and newer. When we were admitted last year there were only six rooms. They have expanded to nine rooms. Brian remember that he had the red room last time. This time we were in the light green room. It was funded by Publix. Perfect room for us. Only thing that could have been a bit more "schreiber" would have been a Chick Fil A room or a Target room.  :)

Notice the ceiling tiles are painted by kids. They let their patients paint a picture and write their name on it.

Brian was all smiles and peeking out to see what crazy mommy was taking pictures of.

This is the playroom for the nine oncology rooms.

Here are Brian and Mommy sitting in the chair because Brian was SCARED of the bed.

Still in the chair.

Mommy's mission today was to get Brian over his fear of the hospital bed. He saw the Chipmunks movie and there was a scene that was in the hospital. Apparently Dave gets smashed in the bed because the chipmunks stepped on the remote and it made it go up and down and closed, then flat. Brian was convinced that he was going to be shut in the bed. He investigated it for a while then decided it was OK, but he didn't want to be on the bed if he didn't have to.

Brian tolerated the IVIG very well and was able to have it administered as fast as they could pump it in. They upped the dose of the infusion every 30 minutes. If Brian was to get sick or lightheaded, etc they would drop the amount down the the previous dose. Well, Brian never minded the increase and was able to have the infusion in a little over four hours.
   When he gets his port flushed he can taste the saline and he HATES it. He always asks for one of us to plug his nose.

He hates having the "sticker" removed.

We were discharged from the hospital and home by 5:40 PM. Brian took both his oral chemo meds tonight and didn't mind it one bit. They are both strawberry flavored. Because we are getting the chemo drugs made into an oral solution we have to go the Pensacola Apothecary to get them made by special compound pharmacist. Apparently not every pharmacy can do this because they need a special hood to vent the fumes, dust or whatever is expelled during the process of compounding the meds. This is so the pharmacist doesn't accidentally inhale what we are intentionally giving to our four year old. It's crazy how something can be very harmful to one person but helpful to another.
   Thank you for praying for Brian Robert today. The day went very well (for Brian). He's a trooper. His older sister didn't have such a great day. She gave our babysitter quite a bit of trouble. Not to excuse her horrible behavior today, but she is just six. She is not doing very well at handling all that we are going through. I know this is a public blog, but it's also our journal to remember this time. I don't want to paint it as super cheerful and rosy when it isn't. Times are stressful. Just to top it off my dishwasher died last night. Like I said stressful. I can guess what I'm getting for Christmas this year.

 Please continue to pray for our family. We appreciate all the prayers and e-mails of encouragement.We love you all.

Friday

Well, we just heard from our Hem/Onc nurse. Brian will go to the clinic on Friday for his port to be accessed and labs drawn. Then we will be admitted to the hospital. In the hospital Brian will receive an IV-IG. Since it is his first time to have one he will have to be in the hospital and it will take all day. We will be allowed to be discharged when the infusion is complete, but we were told to plan on it being an all day thing. Please pray for Brian as he is already nervous about this. He heard me talking on the phone with his nurse. He came in and crawled up on the church pew beside me  and sadly looked at me and asked, "Do I have to be hooked up to a machine again?"
  Please pray for Brian. He will get this boost just to get kicked back down again as we are suppose to start his oral chemo drugs this Friday. We will probably have to postpone his oral surgery. We will see how Friday and Saturday play out before we make that decision. Thanks for caring about our boy!