Merry Christmas

Merry Christmas to all from the lovingBri Foundation and the McQueen family! Watch for exciting new things in the upcoming year. Hold your loved ones close and cherish every moment that God gives you.

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One Year and Christmas

December 2011 rolled in and our family was excited about the upcoming Make-A-Wish trip. The first of the month brought a large envelope for Brianna and as we opened it it was filled with cards of encouragement and prayers from Grace Church in Mooresville. Grace has a service on Wednesday nights called Access. At this service they take all the written prayer requests from the week and pass them out to those in attendance. In groups of two or more each request is prayed for. At some of these services a “large” request is prayed over by all and I was fortunate enough to be prayed over at one of these on Brianna’s behalf earlier in the year. As we pulled the cards out of the envelope and I began to read them one by one my emotions took over and I cried. I can not tell you what it feels like in a situation such as ours what it means to have hundreds of people praying for your loved one, hoping for a miracle right along with you. We were so grateful to receive all the words of encouragement.

December was not going to pass us by without yet another hospital stay though. Bri had gotten sick one evening and she vomited. Since she had no muscle control she could not hold herself up to vomit over the side of the couch so we had to always be on the alert to try and run to her and get her up so that the vomit did not go down her windpipe and end up in her lungs. I was always so scared of this and I lived in fear every time I thought she was getting sick. I would go directly into panic mode and try to get her up as quickly as possible. Since Bri could not tell us whether she thought some went back down the wrong way we just had to monitor her. We thought she may have this time so we packed up and left for Riley. By this time in the journey when we decided to take her to Riley Angie automatically packed a bag for us as it was almost a guarantee we were staying. As expected we reached the ER and were taken directly back to a room. Oncology patients never wait at the Riley ER because of their compromised immune systems. The hospital takes no chances on exposing them to germs while sitting in the waiting room. We went through the normal triage checks and then we saw the doc who decided that we were going to stay. So, after the obligatory wait, we were taken to a room on the fifth floor, the HemOnc floor. By now we had experienced so many stays that the nurses knew Bri and we were taken care of very well. After spending a number of days in Riley we were discharged and allowed to go home. This was great news because we were concerned that Bri was not going to be able to go on her Make-A-Wish trip at the end of the month but now we were on our way home and looking forward to Christmas and then the trip. We were sent home with a suction machine to clean the mucus out of her throat to help her breathe. This machine would be a great help in the coming months.

Just before Christmas Brianna and Tori received a very special visit from Santa Claus who made a special trip into our home to bring the Christmas experience to Bri. We told Bri that someone was coming to see her and when the front door opened he had some sleigh bells and he was ringing them. Brianna’s eyes lit up and with what movement she had left in her arm she conveyed her excitement. He walked into the room and he had brought gifts and you could just read Bri’s excitement as he sat on the couch next to her. There was not a dry eye in the room as this little girl, who had lost so much, got to feel the magic. It was beautiful. after leaving Justin Bieber books and a few other gifts for the girls his visit ended. We are so grateful to him for his visit and we are grateful to our friend Mikii Sutton who asked him to be here. We are forever indebted to him. He brought joy to a little girl who had experienced little joy for the past 12 months.

Santa Bri

In the months leading up to Christmas Brianna would lift her finger and pull her arm up the best she could and point at the TV when she saw something that she wanted. The main thing that she wanted was the Disney Princess castle and there was absolutely no way that we were not going to buy that for her. I thought the price was ridiculous but I would not deny that little girl any wish that she had. When Christmas morning arrived Tori woke us up and we started opening gifts. Tori would take the Brianna’s gifts to her and place them in her lap and then help her pull the paper off of them. When I pulled the big box out I carried it over to the couch where Bri was and I lifted it up to her. I helped her pull the paper off and when she realized it was her Princess castle you could tell she was happy. I spent the next couple of hours putting it together for her and then we got her into the floor and sat her in a support chair that the school had left for us and she played with what she could but there was very little she could really do. It broke my heart to watch her. She would only play with it on one or two more occasions.

Bri big present

With Christmas past we had the Disney trip to look forward to. More on that next time.

As I write this post it is Christmas Eve 2012 so we want to wish all of you a Merry Christmas and Happy New Year.

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WZPL Request-A-Thon

Indianapolis radio station WZPL 99.5 holds a request-a-thon each year to raise money to fund wish trips for Make-A-Wish children in the tri state area. On air personalities Smiley and KJ commit many hours to raising funds to fulfill the dreams of these sick kids. The Bennett and Young families (other families affected by childhood cancer) had taken their Wish trip together and had decided to band together and start giving back by funding other kids wish trips. They started up a softball tournament called the Maeci & Gracie Give Back a Wish tournament. The first tournament in 2011 raised approximately $13,000 which is enough to grant two average Wish trips. They had been on WZPL and granted the first trip to a young girl named Charla who was awaiting a heart transplant. They were going to be on the show to talk about that granted trip and mentioned that they were going to see if Brianna’s wish could be one of the featured wishes in an attempt to help her trip get funded.

The date unfortunately fell on the day of the sibling tour so Angie and Bri attended the Request-a-thon while I took Tori to Riley. Up to this point Brianna had lost so much of her mobility and her ability to speak. She slouched in a wheelchair that had to be extremely uncomfortable to her and I am sure she hated when we moved her yet she remained a trooper and never gave us any sign. She was tough.

Angie and Bri went into the studio and Angie told Brianna’s story. She did a great job and held her composure very well as she explained the hell that we were going through and what our Princess was having to endure. Brianna’s wish would require approximately $6,000 to be fully funded. What Angie did not know was that outside the studio Chris Bennett (Gracie’s Dad) and Jay Young (Maeci’s Dad) were explaining that the true reason they were there was to provide $5,000 towards Bri’s wish. Within seconds of going on the air her wish was almost fully funded. Stephanie, Gracie’s Mom, had held this secret from us for months as the girls took chemotherapy treatments together every other Tuesday. We had no idea and were blown away by the generosity of these two families.

Bri needed another $1,000 to fully fund her trip and the surprises were not complete for us on this day. Also in the studio was a gentleman named Carl Drury. Carl is a colleague of Dani Weaver, an amazing young lady that had been Tori and Bri’s basketball coach in the local Upward Christian based program. Carl had heard about Brianna’s trip and had decided to grant the final amount needed to complete the trip. Carl has his own foundation that he uses to help others in need. It is his way of giving back after his recovery from an organ transplant. We were amazed at his generosity as well as we had never met this man and his wife Bobbi.

So, within a couple of minutes Brianna was fully funded to live her dream of going to the home of the Princesses, Disneyworld. The only thing that stood in her way was the clearance from her doctor which he gave. We would be on our way in late December. Bri was excited.

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Praying for Lane

Welcome to all who have found your way over here from the facebook page, Prayers for Lane Goodwin. For those who just stumbled by here Lane is a thirteen year old, awesome, courageous young man who is fighting cancer. Our family prays for him daily, but we also pray for his family as we know the fear and struggles that his parents and siblings face every day. We would love to be a shoulder to cry on or an open ear to them, and we will if they reach out.

What you are reading is the story of our beautiful daughter Brianna who lost her battle to a brain tumor March 21, 2012. She fought a courageous battle for fifteen months before God took her home. She changed lives here on earth and Angie and I firmly believe that the Brianna Lane continues to mention is our Brianna, still doing God’s great work. I bet she is a beautiful angel.

Brianna used to fix her gaze past our faces and giggle. She could not talk anymore so she could not tell us who or what she was looking at but someone was there. We believe that her own angels were here watching over her.

This blog is a labor of love. We pray that you will stick around and read it and share it with others. We want to let other parents know that they are not alone. When your child is diagnosed with cancer, you feel  like you are on an island but you can see the world go on about the daily business at hand. They move quickly and your life feels like slow motion.

I am slowly catching this blog up. I started it many months into Brianna’s treatment and since her passing I have not done a great job of keeping it up. I commit to doing better and being a voice. Please take the time to go back and start from the very beginning. And please, every day, say a prayer for Lane and his family.

Steve, Angie, and Tori McQueen

ALWAYS lovingBri!

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The Sibling Tour

As we said before, Riley Hospital does not limit their responsibility to the patient. They offer multiple programs for the entire family to support them as child goes through treatment. One of the programs that the cancer center offers is a sibling tour. This program walks the brothers and sisters through the different areas of the hospital that their sibling visits and explains why they go there and what the doctors are looking for.

On November 17th, Riley offered a tour and we had signed Tori up for it a few weeks before at one of the chemo treatments. I left work early and went home to pick her up. I would be taking Tori to the tour while Angie and Bri met the Bennett’s and Young’s at WZPL for WZPL’s annual Make-A-Wish Request-a-thon on the Smiley Morning Show. More on that later.

Brianna had been an inpatient on the 5th floor, the hematology/oncology floor, when one of the sibling tours had come through. This was a large group so when Tori and I showed up for our tour we were expecting the same. After all, it is quite unfortunate but the clinic and cancer floor are normally full of patients so there are many families to get through the tour, if they desire. When we met Bri’s social worker, Stacey Koleszar, at the clinic we learned that one other family was supposed to be coming so this would be a small tour. After waiting around for about fifteen minutes we were told the other family was not going to make it so Tori was going to get a private tour. She felt pretty special about that.

The tour started in the Hematology/Oncology clinic where Bri got her checkups and then we moved the infusion rooms. This is where we spent our days during chemo treatments. I have to admit that I hated going here. One reason was just the fact that my beautiful daughter had to endure something she did not want to do. We sat and watched her be pumped full of poison, a poison that was hoped to kill the cancer, but also a poison that bore the possible side effect of causing other cancer. From the infusion rooms they took us to the clinic lab. They explained to Tori that this is where they brought Bri’s blood just prior to every chemo treatment to check all her counts to insure that they could safely give her the chemo. They even allowed Tori to look at some blood under the microscope and explained how they read the counts.

From here we went downstairs to the area where Brianna had her first CT Scan and an MRI. Just down the hall was where she had swallow studies done. Our hearts were broken so many times in these areas. The tech’s took Tori into a room and showed her the machine used for the scans and then took her to the tech station where they allowed her to see a full body scan and identified different parts of the body. It was very interesting as I had never seen this part either. Every department we went to did an outstanding job of explaining to Tori what Brianna had to go through in their area along with why they performed it and what they were looking for. We made our way out of this department and headed back upstairs to the 5th floor. Tori was familiar with this area already as she had visited Riley while Brianna was inpatient. The nurses knew us, too well in my opinion, and were very good to her as they took her around the floor and showed her their part. There is not much to show on this floor except patient rooms, the supply room, nurses station, and the refreshments/play area.

The tour ended in the play area, which as much as it pains me to say it, was named after Jeff Gordon. It is my understanding that he helped remodel it and is responsible for the items in it. There are board games, books, a jukebox, video games, and many other items. Child Life, a group that visits with the patients and puts on different workshops, uses this area. Krista, who we know well from Bri’s previous stays, and another worker sat Tori down at one of the tables and taught her about the composition of blood. They even let her make blood using corn syrup, red hots, and sprinkles.

This tour is such a blessing to the siblings. Many don’t understand all that is going on and this gives them the chance ask questions and get straight answers. In addition, siblings experience a loss during the sickness. Mom and Dad are so focused on taking care of brother or sister that the siblings feel left out. Their time with Mom and Dad is compromised due to the time and attention required to provide care to the sick child. This tour lets them feel that the attention is totally on them for awhile. The last thing that the siblings go through on this tour is that they receive a gift bag with some nice gifts, one of which is a handheld video camera. It is a wonderful gesture and I hope that they continue it for a long time to come.

Next post we will go back to the granting of Brianna’s wish. It will be a good one so check back soon.

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Bri Makes a Wish

On November 3rd we entertained two young ladies who represented the Make A Wish Foundation. They came to the house to interview Brianna and find out what her wish was going to be. It really is a good experience for the child as they came bearing gifts and really talked to the children. Unfortunately for them Brianna was unable to tell them all about her wish but we had been trying to get ideas from her in the days leading up to the visit. During the session we let Tori be Bri’s spokesperson and she did a great job. Tori would ask Bri different questions and Bri would either shake her head yes or no or give her sis a thumbs up or thumbs down.

As they waded through their list of questions that would end up tailoring the wish to meet Bri’s desires it became very emotional for me. On one hand I was touched at the love and care they were taking with the girls and on the other hand I was feeling the hurt that just knowing she had a reason to be granted a wish brought. A child’s Disney trip should be because the family wanted a vacation not because the child has a disease that could very well take their life down the road.

I also felt guilty. I had put this meeting off for months. We could have requested a wish alot earlier in the sickness but I wanted to wait. There was a voice in the back of my head that felt like if I bought into this wish that I was buying into the fact that Brianna could die. I put it off, selfishly, for so long that she had to take her trip confined to a wheelchair and on a feeding tube. How could I have done this? My heart was shredding then and it has not gotten any better. I cheated my daughter out of a more enjoyable trip by my refusal to do this sooner. I continue to struggle with this today as I type this and pray that Brianna forgives me.

The meeting lasted between one and two hours. Tori walked Bri through her wish and she requested to go to DisneyWorld. Weeks before she was wanting to go to Disneyland but Maeci and Gracie had gone to Florida and Bri decided to change her mind.

The Make A Wish ladies explained that when they returned to the office the next day that they would start putting all the data together and would estimate all the associated costs. They would then seek funding for Bri’s wish. Over the years I had been under the impression that the organization had a pool of money that they granted wishes from. That is not true. They obtain the request, plan the trip, and then seek donors to send that child on their wish trip.

As the ladies left, we were all excited. The hard part now was waiting to see if the wish was granted.

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Home Stretch

As you read through the posts titled “The Hell Named Silence” and “ICU” you may have noticed that I failed to tell you about a surgery that Bri had on Friday October 21st. That is the day that she had her Gtube placed. It was actually a pretty uneventful surgery and the surgeon was very happy with how it went. It only took about an hour and once Bri recovered we returned to fifth floor only to have the CART incident that you already read about in the last post the next morning.

So now we continue with events of October 25th. Bri was doing well but they were concerned with some blood in her feces. During rounds the doctor told us that they were ready to send us back to the Hematology/Oncology floor (fifth floor) once they determined what was causing the blood. Test results were returned shortly and the medical team decided that it was just irritation from all the diarrhea that she had experienced over the past few days. Around mid morning we were told that the orders to return to fifth floor has been written and of course we spent most of the day waiting for the actual move. When we finally got to make the move we entered the unit and we were met with the charge nurse who informed us that we were going to room 5110 and Angie spoke up that we hated that room. She said that she would love to move us but the unit was pretty full. We had to accept it and we did of course. If we were disappointed in the room selection it was nothing compared to our nurse selection. The charge nurse had assigned the same nurse that we had a few nights before when we had the problems and Angie quickly piped up and said no. The charge nurse could tell that Ang was adamant that we would not accept that nurse and she immediately, and without question, went and switched nurse assignments for us. We were glad to be out of ICU because being back on floor meant improved health but we hated to be back on floor because it meant less personal care for Bri. ICU carries a higher level of one on one than care on the floor does and we were still somewhat in fear.

Throughout the day Bri had been in good spirits. We noticed that as the day wore on she seemed to be getting depressed. We really felt like she was understanding that she would not be eating normally for awhile. We wanted to talk to her about it but we wanted to discuss this with the child psychologist first. How should we handle eating at home? Do we bring her to the table? Do we eat in shifts so she does not actually see us eating? We had not been home yet but we were already consumed with guilt every time we stepped out of the room to get food. One of us always stays in the room with her in the hospital so we were already eating in shifts but how would we do this at home. We vowed that food would not pass our lips when Bri could see us. We just could not do this to her. We also were concerned about the smell of food in the house while we were cooking. How would we handle that?

The 26th was an up and down day for us. Bri was getting fed by a pump through her gtube and the nurse who programmed the pump on day shift had made a mistake. Bri was supposed to get 240 ml over two hours. We knew this and we looked at the pump and saw 240 ml on the display so we thought all was well. Not. The pump should have displayed 120 over two hours completing the feed at the recommended 240 ml feed. What does all this mean? Brianna got double feeds two and one half times through the day. She basically got a full days feeding in over about half a day. She was miserable. My big concern was that might vomit from this and I was worried that she might aspirate with her current swallowing problems. Ang was mad. I was too scared to be mad. They gave her some anti nausea meds and that seemed to settle her enough where she never got sick. Thank God. To add insult to injury, the medicine port on the gtube popped open at some point while Bri was asleep and soaked the bed with formula. Poor baby could not win.

There were positives throughout the day as well. Stacey K., Bri’s social worker at Riley, caught me in the hallway and asked if we had an iPad. I told her we did and it was a family iPad. She said that she would be to the room later to give Bri a new one. She brought it up and we noticed that it was donated to the hospital by The Aidan Brown Foundation. We are grateful for the ministry they provide and were honored that Bri received one of the iPads.

Perhaps the biggest positive happening today involved stones. Yes, I said stones. We had gone downstairs for a procedure during the late afternoon and when we returned to the room there was a gentleman leaning against the wall. No words were exchanged as we walked past him and followed the nurse pushing Bri into her room. We got her settled in and I left the room about ten minutes after we entered. He looked at me like he wanted to approach so I slowed. He said I probably did not remember him but he had participated in the fundraising dinner for Bri back in February. He was instrumental in the items for the silent auction and he went way above and beyond. As we talked he told me he had something he wanted me to have. He reached out his hand and he placed a bag with five stones in it in my hand. Then he told me a story about how a pastor had given the stones to him to face trials in his life. The stones were picked up in the Elah Valley by Jeff Faull, Senior Pastor at The Church of Mt. Gilead. The Elah Valley is the very spot that David boldly stood up to Goliath and slew the giant with one stone. If you recall, David picked up five stones. The gentleman told me that he had approached Jeff and asked if he could give the stones to me and that they prayed and cried over this. I now had the stones and as Tony Imburgia handed them to me he told me that only one stone was needed to beat our trial.

On the 27th, Angie fed Bri for the first time. It was very emotional for us and I remember Angie and I fighting back tears as she tried to make it a game with Bri by asking her what she was eating. The feed went well, as did the early feeds on the 28th and the doctors decided that we could go home if we felt comfortable. After ten days of ripped emotions and countless procedures we were taking our baby home. We had our fears how we would be able to handle her care but we knew she wanted to be home too so off we went.

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