Early in the morning of October 22nd we were awakened by a sound that was very frightening. As Brianna took each breath it sounded like someone breathing underwater, a loud drowning sound. Angie and I both awoke to this and there was no way to ignore it and try to go to sleep. It brought fear to us. We called the nurse in and she came in the room and looked at the monitor. Brianna’s oxygen levels were OK and she told us that she was fine. I thought Angie was going to come off the pull out chair that she was sleeping on but she held her wrath. We told her that we did not like the sound and she listened to her with a stethoscope and said that she was moving air and was OK.
As she left the room Angie and I sat and listened to Bri for a couple more hours with our eyes glued to the monitor. At morning shift change, the nurse came in and introduced us to the day nurse. They quickly left to check in with the other patients and the nurses helper popped in to get things started. When she heard Bri she was taken aback. She immediately went to find someone to come and listen to her. She returned with the resident doctor and he came in and checked Bri out. He explained that he was going to bring a team in to listen as well and they would make a decision on the next step. This is known as calling a “CART” and we now know as parents we can call one ourselves. CART stand for Children’s Acute Response Team. Had we known it earlier that morning we would have done it ourselves.
It was not long after he told us this that there were eighteen people in the room assessing and discussing the situation. Angie looked very scared when the Chaplain showed up with the team but we later found out that they are required to be at each one of these assessments as family support. We wish someone had informed us earlier. After a few minutes it was decided that we needed to have a CT scan done and then we were to be admitted to the ICU. The nurses on the floor could not devote the time needed to help her and the ICU has Respiratory Therapists dedicated to the floor who can provide quick response to any needs. We were actually glad that we were headed up there.
They got Bri up to the room and settled and began an aggressive campaign of trying to get her secretions removed. They also were working to get her feedings going through the Gtube and were experimenting with what calorie levels and amount of formula she was going to be able to tolerate. They started out with a higher calorie formula that would allow us to give her three feeds a day. We had a choice of placing her on a 24 hour pump but chose not to do that as we wanted to be able to take her places without her having to be hooked up. The higher calorie feed proved to be too rich for her system and she had constant diarrhea as the food pretty much ran directly through her. So, the decision was made to go to a lower calorie but increase the feeds.
The care we received in ICU was so awesome. The first day up we had a great nurse named Kourtney McMann and an equally great respiratory therapist named Ashley. Sorry Ashley but I have forgotten your name. These young ladies are what all nurses should aspire to be. Very professional in their job but not so professional that they could not come down and be friendly and compassionate. They were a blessing to us during our stay in the unit and we are thankful for them. I am not saying that the rest of the team was not good because we received exceptional care but these ladies stepped up and caught our hearts.
Bri with Nurse Kourtney
During this time we were introduced to the cough assist machine. This machine forces air into the respiratory system through a mask and then draws it back out. The inhale and exhale pressures can be adjusted and also the dwell time. Since Bri was having trouble swallowing and moving secretions this machine would assist in that. It worked very well and they were able to remove many secretions.
The next day, October 24th, Dr. Pradhan and the Nurse Practitioner Jane stopped by Bri’s room. We discussed the swallowing issues and during the conversation I watched as her face tightened while she prepared herself to ask a tough question. “Do think this is a permanent thing?”, she asked. The discomfort showed on their faces and it was evident that we were not going to get the answer we wanted which would be a firm and definite No. What we did get was, “We can’t answer that. We don’t know.” Ang began to cry and I watched as her spirit deflated before my eyes. I reminded her that we could not give up hope. We pretty much spent the rest of the afternoon and evening feeling sorry for ourselves, feeling sorry for Bri. I turned to the Bible and searched for strength to handle the news. Thank God He was right there for me. As usual.
The lovingBri shirts are hot off the press and my cute little cousins Macina and Delaney are showing them off. They are selling them for $10 each. If you are interested in getting a shirt you can pick them up at Core Fitness Tuesday, Thursday, and Friday mornings from 9 to 11 a.m. or Tuesday evenings 5 to 8 p.m. They will also be available this Friday 2/17 from noon to 4 p.m.
In addition, you can contact Suni Johnson or Melissa Faulkenberg to find out any other locations that they will be selling them. Thank you all for your support.
Our family would also like to send our sincere gratitude to Suni Johnson and Melissa Faulkenberg for the idea of the Zumba event and the Tshirts, our daughter Tori McQueen for her logo idea, and Stacy Mayes for funding. A very special thank you to Eric and Holli Fenwick of Tri County Sports in Mooresville for printing the shirts.
Thank you all for loving Bri. Our hearts are full of gratitude for your support of our beautiful daughter.
After the NG tube placement we were taken down to xray. The docs had ordered this to insure that the tube placement was correct, especially since they had so much trouble inserting it. Our nurse on the fifth floor, which houses the hematology/oncology inpatients, called for a transport nurse to take us down to radiology on the first floor. This was evening time and we were able to go right in one of the rooms as soon as we got down. I transferred Bri to the xray table and laid her back. The radiology tech became confused about what type of xray was needed and she left the room to make phone calls. She returned after some time and positioned Bri for her scan. She completed the scan and I went to remove Brianna from the table. I panicked. Bri was really red and she was not breathing as I sat her up. I yelled out to the tech that she was not breathing and she panicked and just stood there. I said that we needed to suction Bri out and she just stood there in shock. Angie headed for the door to grab someone and the tech finally moved and went looking for someone.
She returned with a doctor who was off duty as he was in his suit and appeared to be going home. He came in and started asking medical history questions. I quickly told him what her problem was and proceeded to tell him that I felt her throat needed suctioned out. She had neither the strength or the ability to clear her throat like we do and she could not breathe. He continued to ask questions and the longer we stood there the madder Angie and I got. I was getting ready to blow up when our nurse from upstairs showed up. The tech had called her to come down to help out. She stepped right in and the doctor started talking to her and she pushed her way in and immediately assessed the situation. We looked back on the wall and right there was a suction unit. She grabbed a suction catheter and went to work. The catheter was a small one and did just enough to clear the airway so Bri could breathe. This whole time the tech was questioning her, insinuating that she should have never let a transport nurse being us down to radiology. We all let her know that Brianna was stable when she came down and that she went the wrong direction on her watch. Our nurse said she is stable and suggested we get her upstairs away from these idiots. We agreed and took off for the fifth floor.
Bri was cleared up soon after we got back upstairs and after close to thirty-two hours or so was finally given some “food”. Bri’s food consisted of a liquid formula much like you give a baby. This seemed to satisfy her which calmed her down some. With her belly full we were able to get her to get some sleep and Angie and I also got to get some sleep as well. The next day would be her surgery.
The weeks leading up to this hospital stay Bri had slowly become more difficult to understand when she talked. We struggled at tines to make out what she was trying to say and it was so frustrating for her, and us. It brought tears to our eyes many times when we could not make out what Bri wanted. She could not tell us if she felt pain. She could not tell us where the pain was or how bad it was. It is the most helpless feeling in the world to look into your child’s tear filled eyes and not be able to understand what they need from you. Each person on this earth has their own hell on earth. We can tell you that silence is hell and we are living in it every day.
Do you like to Zumba? You can get a great work out and have it benefit Bri at the same time. My cousin Suni Johnson and our friend Melissa Faulkenberg have been working their tails off and have put together an event called Boogie for Bri. We are very grateful to you both! This event will take place March 10th as detailed below. I am lazy tonight and I am just going to copy the info from Facebook below. How did you like the logo? Crystal Patriarche, founder and publisher of Booksparks PR Agency in Phoenix and Armando Torellini from Birth Studio in Chicago took some of the idea Bri’s sister Tori came up with and ran with it. They did such an awesome job! Thank you all so much! You will have the opportunity to purchase a lovingBri shirt from many places in the next few weeks.
There will also be raffles and a silent auction at the event. If you are not a facebooker then you can contact someone for more information at the email listed below. Thanks to everyone who works, dances, or contributes to this event. Our family is extremely grateful to each and every one of you.
Come join us for a Zumba fundraiser benefitting Princess Brianna McQueen. Bri is a beautiful 9 year-old girl fighting an aggressive brain tumor. Please find out more about her story at LovingBri.wordpress.com
Price $15.00 (60 minute Zumba)
Saturday March 10, 7:00pm at Mooresville High School gymnasium (doors open at 6:15)
T-shirts available for purchase as well as many gift baskets for raffle
100% proceeds go to Bri’s fund**
60 minute Zumba session led by Certified Zumba instructor Julie Ballesteros
For questions or concerns please contact us at firstname.lastname@example.org
**Any additional donations are greatly appreciated and can be taken to any local 5/3 bank in a benefit account under Brianna or Angie McQueen’s name
Mooresville High School
550 N. Indiana Street, Mooresville, IN 46158
We learned early on that this trial would be a rollercoaster of emotions. We have been riding the top of the hill for quite some time and someone decided we were due to have a fall today. Angie called me at work around noon October 19th and was upset. Brianna could not keep food or drink down and Angie even had to do the Heimlich maneuver on her to dislodge some food that had gotten stuck. It is a hard feeling to hear your spouse crying on the other end of the phone as soon as you pick up. Your heart immediately sinks. I told her to settle down because I could not understand her at first but finally got the story from her.
I told her to call the oncology clinic at Riley and ask what we should do and then call me back. Unfortunately Riley has an on call nurse that you go through first and then you are connected to the doctor. Of course she took the info and told Angie to await the call from a doctor. Funny how timing works because Angie was helping Bri go to the bathroom when he called back and she missed the call. The voice mail that was left for her was to bring Bri into the clinic on Wednesday or Thursday. When Angie called and told me this we both said that this was not going to happen. How could we wait knowing she was having trouble swallowing? She was going to want a drink or some food and we were scared to give her anything now. She called back again and when she was able to fully explain the situation he told her to bring Bri to the outpatient center. Derek drove me home so that I could go with them and I spent the entire trip from Franklin praying for my daughter and my wife.
Ang had everything packed for us to leave. We don’t take chances anymore and we pack for an overnight stay automatically when Bri has to go in unscheduled. As I was trying to put Bri’s coat on her she folded her arms and shook her head no as she started to cry. The tears welled up in me too as I told her we had to go. We got her to the car and it was another of those gut wrenching drives with her in the back crying and Angie trying to comfort her. She held her mommy’s hand all the way to Riley. She definitely knows the way because as we got closer she began to whine more. This is the hardest part for us.
We arrived at Riley and reported to the Hem/Onc clinic where they checked her out quickly. The first thing that they wanted to do was get an MRI scan to look at the neck and then once they completed that they wanted a swallow study done. During the swallow study they give the patient drinks and food and watch it go down. Bri had been on thickened liquids since the very beginning of this nightmare and had not had trouble with anything until now. The scanning machine in the swallow study room has a camera on each side of the neck. There are monitors located in the room as well so the techs can watch the progress as they administer the test samples of liquids and solids. Angie sat close to Bri and helped balance her while I stood by the doors. We watched as they started out with the thickened liquid that we had been giving her for months. As she swallowed it went down her windpipe. They mixed up a thicker liquid. We watched as they poured a little bit in her mouth and it also went straight to the lungs. She had definitely been aspirating on her liquids for an unknown length of time. I looked into the faces of the techs as one looked at the other with mild concern on her face. They moved on to pudding. Nice, thick pudding. As they spooned a little into Bri’s mouth I alternated my gaze from the monitor to the faces of the techs. I think Angie and I both held our breath as Brianna moved the pudding in her mouth a little bit and then she swallowed. As I watched the pudding move towards the back and she swallowed it felt like someone punched me right in the throat. It went straight down the windpipe. The techs had a very evident look of disappointment on their faces and they stopped the test right then.
They explained to us that given the results of the test they had to suggest to the doctors that Bri not be permitted to have food or drink by mouth at this time. They did say that they thought she would be a candidate for a new study down the road but there was too much of a risk allowing her to eat or drink. We went up to fifth floor, or the Motel 6 as I have named it, and settled in for the night.
Bri’s oncologist stopped by on Thursday to talk about the MRI results. He informed us that the tumor did not look like it had grown any but it looked like it flattened out. He also explained that it looked like the outer area where the radiation killed the tumor had calcified and that was putting pressure on areas in the throat including some nerves. This information from the MRI along with the results of the swallow study forced a decision to insert a feeding tube. The surgery was scheduled for Friday. Since Bri had not eaten in over 24 hours they were going to insert an NG tube, a temporary tube that goes through the nose and passes the throat and ends dumping into the stomach. They would use this to provide her some nourishment until Friday. The nurses came in to insert the tube and had major troubles doing so. Angie had experience doing this as she did this many times when our granddaughter Jaelynn came home from the hospital and was fed through an NG tube for weeks. I thought Angie was going to knock the nurses out as attempt after attempt failed and Bri cried more and more. Finally they got it inserted and then they took us for an xray to make sure that the tube was placed in the right area. More on that next post……
Tori visited the hospital today and drew this on the board in the room for Bri.
I have another blog which includes a podcast that deals with motorcycling, which has been very neglected over the past year, at Motorcycle Nation Podcast. I was doing research for the site and I ran across information on a ride that I had heard of in the past but had dismissed. The Ride for Kids is a motorcycle ride that exists in forty cities across the United States and is the major fundraising arm of the Pediatric Brain Tumor Foundation. If you are a motorcyclist and would like to participate click on the link and find the nearest city to you. If you are in Indianapolis the ride is September 9, 2012 and is held at the Indianapolis Motor Speedway. Click here, Indy Ride for Kids, to get more info on the Indy ride only.
The 2011 ride was held on September 11th and we participated. Kids with brain tumors are invited to to come out and be recognized as a “Star” kid. The Stars get to come to the ride and be recognized and if they choose there are trikes and sidecar fitted motorcycles that will allow them to ride in the ride. Our good friend Clay Cooper blessed us by coming to the ride and allowing Brianna to ride in his sidecar.
She wanted Angie with her so Angie rode on the back to make Bri feel better. The ride left the Indianapolis Motor Speedway and wound its way through Eagle CreeK Park before returning to the Speedway where they allowed us to take a lap around the famed Brickyard oval. When we returned they had a quick box lunch set up for us and we went into the Celebration of Life which is a time to recognize those that brought in the highest donations and also to get all the Stars on stage and celebrate them. We had current patients along with survivors at the Indy ride this year and Tori brought in the third highest donation amount for the entire ride which was $1210. She worked really hard and her goal is really big for the 2012 ride. She wants to raise $5,000 this year so she has set the bar high. If you want to make a donation through her you can make it online by clicking here. Please feel free to share the web address with anyone that might be interested in helping her achieve her dream.
Tori rode with Clay in the sidecar after the ride as we left to go to BW3’s. She loved it especially the sidecar wheelie that Clay did for her.
The Celebration of Life was an emotional part of this ride. The Ride Manager, Mark Muhlenfeld had survivors and kids currently fighting brain tumors on the stage asking them questions. There was some fun banter with all the kids but who else would steal the show but Brianna’s chemo buddy Grace Bennett. Gracie is a happy go lucky, beautiful child that does not know a stranger. She had the crowd laughing as Mark asked her questions and she complained about her helmet. Plenty of motorcyclists all over the nation would definitely agree with her. Grace even got her picture on the national website. All the kids had a great time and this day allowed them to forget about their sickness for awhile and feel normal. So many smiles were seen that day from the kids and there were plenty of smiles and tears from the adults. It was a very special day.
Bri and Gracie together in the sidecar.
Tori, Bri, Gracie, and Maeci (a non brain tumor cancer surviving hero) get silly at the ride.
After the ride I was speaking with ride manager Mark Muhlenfeld and he said that he understood that I wanted to become more involved with the ride. I have a vested interest in this ride because the funds raised go to brain tumor research. I want this stopped. I want the causes to be determined so prevention plans can be developed. For the ones already battling, I want ways to beat it to be identified. I don’t want another child to suffer. I told him yes and he inquired if I wanted to be involved enough to take over the ride for 2012 as the Task Force Leader. I discussed this with Angie and friends who went on the ride with us and everyone gave their support so we took the job. Your support is needed too. Ride in the ride, volunteer to help on the day of the ride, or maybe fill a position on the Task Force which takes a full year commitment. If you are interested let me know. Email me at http://indyrideforkids.com
On this MRI day, August 19th, we were blessed to have a friend, Melissa Faulkenberg, visit in the hospital. She had sent us a message asking if we would like company as she felt that no one should be alone during that time. We were glad to have her as it has already been stated how much anxiety and fear we feel during these times.
When Brianna recovered enough in the recovery room after the MRI we got her dressed and went upstairs to clinic so that she could receive her chemotherapy. When Brianna comes out of sedation she is a monster and today was no different. She also has very little control over her muscles and she feels like a big piece of rubber when you pick her up. We went up to clinic and went to the infusion room. As Brianna received her treatment her primary oncologist stepped in the door. I could have sworn that the air left the room. He looked at us and said, “I am surprised to be telling you this but her tumor has significantly shrunk.” The air stayed out of the room for me. All I remember saying is, “Praise God!” The air seemed to fill the room rapidly. A few tears filled the eyes in the room but we were all elated. Sometimes we wonder what the kids understand and it was quite clear that Brianna definitely knows what is going on. As we all celebrated, even through a few tears, she began to cry.
Dr. Pradhan asked if we would like to see the scans and we said no. I do not recall if I have ever revealed to the readers of this blog but since the beginning we never wanted to see the scans. For me, the only way that I can explain my reasoning is that I don’t want to see the vile, disgusting thing that is hurting my daughter. I don’t want to “put a face with it” as they say. Melissa, who is studying nursing, admitted after the doc left the room that she wanted to see it and we said we would give permission for her to see it but before we had another opportunity to ask she had to leave to pick up her kids. The longer we sat there Angie became more and more curious and decided that since he used the word significant that she wanted to see it. I was really surprised but I told her to go and look. She went and the Nurse Practitioner, Jane, that she wanted to see it and they took her into their office. They first showed her that scan from December that was done with the initial diagnosis and then the scan from this day. Jane was telling her that the results they were looking at were not what they typically see. When Angie told me this I told her she should have told them we did not serve a typical God.
We were on cloud nine. God had answered prayers and we had just made a huge leap and won this battle. There would be more battles to fight on the way to the war but this battle had to be considered a victory. The tumor was not gone by any means but to get shrink out of this type of tumor, the worst there is, was a victory. It was time to march on.