Friday, September 28, 2012

Pink the Rink and Go Gold

Thanks to the Bergeron family for putting us in touch with the coordinator of the Back to School Classic Belle Tire Hockey tournament.  It has opened the door to us joining up with the Lakeland Hawks' efforts to raise awareness for cancer.  This is their third year  "painting the rink pink" and while players and fans will be wearing pink, they will also have gold childhood awareness ribbons on their helmets (thanks to the Millen family of Paint Protection Plus for making the decals!)

These young  players are taught to play for a cause bigger than themselves which just happens to be exactly what the  "A" in BLAST stands for!  Their sticks will be taped pink and will have Lisa's name written on them.  They have also offered to let Lisa do a ceremonial puck drop at the start of the game if she feels up to it.  This is definitely a step in the right direction of raising awareness and
More Awareness = More Attention = More Funding = More Research =
Improved Treatment and Possible Cure!
The Lakeland Hawks will be playing at 4:40 tomorrow at Dearborn Ice Skating Center (DISC), formerly named Mike Adray Sports Arena,  so if anyone is looking for something to do tomorrow afternoon you can go cheer on the Lakeland Hawks and applaud their efforts to raise awareness.
Please keep the prayers coming.  Lisa made it thru the week of chemo and so far her counts have not fallen....but...chances are they will plummet soon and quickly.  With all the colds and germs going around low counts put Lisa at great risk.  She is experiencing pain again and requiring more meds to keep it under control and seems to fatigue easy...this could be from the disease or from the chemo...only time will tell.
For those of you keeping tabs on Bridget...below is what her mom posted today. Please continue to pray for these girls.  And, yes, I'm still praying for the miracle...."if you have faith, everything you ask for in prayer, you will receive." (Matthew 21: 22)
Still in PICU
Posted 2 minutes ago
It has been a long week since my last update. We have been inpatient at Mott for two weeks now and in the pediatric ICU since last Friday. You begin to lose track of the days in a hospital as the days and nights all begin to run together.
We have been on a bit of a roller coaster as they try to stabilize Bridget's sodium levels and control seizure activity. We came up to the ICU because some of the seizure drugs they might need are pretty heavy hitters that can relax the breathing so much she could require intubation. It is a tricky mess to get the sodium under control as brain tumors and injuries often cause the body to either dump salt (salt wasting) or cause a hormone imbalance that causes the body to conserve water effectively diluting it's salt reserve (SIADH). It is a delicate balance as she appears to maybe have both conditions.
Seizures can be caused by sodium deficiency and Tuesday Bridget had 8 seizures while on EEG monitoring, None of these were particularly scary, though the longest was 4 1/2 minutes. If you didn't know Bridget you would probably not have even noticed them. We fear, however, that the seizures if caused by tumor will increase in frequency and intensity. Seizures are terrifying. Please pray that we will find the right balance to be able to bring her home with seizure activity under control.
Bridget is extremely fatigued and her little body is conserving its energy. She is barely awake during the day and barely moves even while sleeping. The nurses come into to turn and move her regularly. She is swollen from excess fluid. There are so many reasons she could be so extremely exhausted. She needed a transfusion of hemoglobin (red blood) . Red blood carries oxygen so it can cause extreme fatigue when it is low (anemia). The seizures and the meds used to control them can each cause extreme fatigue. They needed to give benedryl before her transfusion. That stuff alone knocks her out. So many things that could leave her completely wiped. Of course, the real concern is that the fatigue is just the cancer taking its toll.
It is likely they will move us back to Floor 7, the oncology floor, today or tomorrow. She seems to be stabilized on the sodium levels and seizure free right now. She sleeps quite peacefully. She had a number of visitors this week, friends from here at the hospital, school, camp and church. She opened her eyes and interacted a little with many of them. We feel incredible support from the messages of love on this page and sent and brought to us.
We have spoken with both palliative care and Angela Hospice. Our plan is once she is stabilized to bring Bridget home for hospice care. With children hospice care can be coordinated with continued treatment. We still hope that we can get another round of chemo for Bridget and that can be done even while in hospice. Angela Hospice believes in the “nest is best” philosophy so that children are surrounded by the people and things they love and are familiar with. I wasn't particularly comfortable with this two years ago, but now that Bridget has had our den downstairs as "her room" for the past 6 months I think this is the best plan.
Bridget is not really active now, but hears a great deal even when we think she is asleep. Last Friday I had a friend bring me some rosaries that were blessed in Bethlehem and we were talking quietly about them. We then figure out that Bridget was trying to say something. When we went to ask her what she said, she wanted to know how many decades of the rosary (grouping of prayers meditating on a specific event in the life of Christ) she needed to say! I told her as many as she wanted and gave her one of the rosaries.
We were thrilled with the ND victory and all the MI fans who "converted" to fans or didn't mind the victory as much as usual just for Bridgie. I watched the game at the hospital with her. Bridget's nurse painted a big ND on her EEG head wrap. Like her sister Catherine and the rest of the Notre Dame and Saint Mary’s students, she was wearing a lei to honor Manti Te'o, the ND player who lost both his grandmother and girlfriend to leukemia a couple of weeks ago. She slept through most of the game, but she knew it was on and that was enough. By the way, please keep Catherine in your prayers as well. She is loving her freshman year at Saint Mary’s, but being away from Bridget during these days has been very hard on her.
We are sad, but there is a peace and joy in Bridget's room every day. We are treasuring our time and delight in the little interactions that happen when she’s awake – a nod of the head, a thumbs up sign, or an attempt to stick out her little tongue. We are continuing to beg the Lord to heal Bridget. Please continue to ask God for this mercy. From her bed, Bridget continues to teach us about strength and faith, love and bravery, suffering and its value. We know we will never understand why this has happened to her, but we have seen the evidence that God has used all that she is going through.
Thank you, friends, for all your support. We feel the love and prayer that surrounds us. We are so very grateful.
Every Day With Joy!

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