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Thursday, June 29, 2006 7:42 PM CDT
Not the news we thought we would be giving tonight. Brynna fought the hard fight today, but this was one hurdle she couldn't overcome. When they took her off of the respirator, she couldn't breath on her own so we had to let her go. She is with God now and although we really think she should still be with us, we know that she is not in anymore pain and she can smile that beautiful smile that lights up her eyes again. Please pray that God gives us Brynna's strength to get through this.
Love and God Bless - Alisha, Pete, Zach, Lexi, Brynna and Chelsey
Wednesday, June 28, 2006 9:36 PM CDT
Today was a long day with Brynna taking important steps towards getting her tube out, but it didn't happen in the end. We really thought she was getting there, but everyone made a decision at the end of the day that she was still too sleepy to attempt it.
The day started with a look at her chest x-ray and her lungs were much clearer and more expanded than they've been since last Thursday. With that and a lot of other factors stablizing, her doctors decided to gradually decrease her sedatives throughout the day until they turned them off completely around 4:00. She alternated between good wakeful periods and a lot of sleep all day long. As the doctors decreased the number of breaths they were giving her and increased the amount of work she had to do to take her own breaths throughout the day, Brynna kept up with what they wanted her to do. By the end of the day, she was really only one small step away from being ready but she just couldn't keep her eyes open, so we opted to let her rest with a break tonight and start again first thing in the morning. Through the night they will only give her the sedative as needed so that she will be more alert tomorrow. She's only had two doses since 5:30 so that's a good sign. We had to give them to her because as she wakes up she gets agitated and starts gagging on her tube. She is definitely expressing that she is tired of all this and wants the tube out. We could tell she was very disappointed that it wasn't today. She did a great job of clearing the hurdles and meeting all of the challenges they put to her today and we've been trying to keep her spirits up, assuring her that she is doing a great job and encouraging her that the tube really will come out as soon as she's ready.
I'm exhausted since today has been such a tense day full of so much anticipation. Please forgive me if the above entry doesn't make sense. I think I've read over it half a dozen times and I start to fall asleep about half way through every time, so I'm going to sign off for now and I'll update again tomorrow.
Thanks for keeping us in your prayers and for the words of encouragement!
Love and God Bless - The Peters
Tuesday, June 27, 2006 7:17 PM CDT
Tonight's update will be short and sweet (maybe:0). Today was relatively uneventful. Brynna had her EEG this morning and while we won't get the results until tomorrow morning, our nurse told us that they didn't see anything alarming while they were doing it. They've kind of been chasing Brynna's blood counts all days with little changes, like giving her more insulin, or a boost of potassium, sodium and calcium. She's been quieter and less responsive today, but that isn't necessarily alarming because they've made some positive changes with her respirator that are making her work a little harder and may be contributing to her being more tired. They've decreased the number of breaths the respirator is giving her from 12 to 6 and she is holding her own with breaths well above that. The strength of her breaths have increased throughout the day today as well. All good news and apparently signs that she may be getting closer to possibly coming off of the respirator. They have decided to hold her feedings tomorrow morning in case they assess her and everything is looking really good and they think Brynna (and mom and dad) are ready for her to come off. They've assured us that they will only try if she is at the best possible place she can be to insure the extubation will be successful. If they think she isn't ready based on her x-ray tomorrow morning, her breathing through the night, and her blood work, then they'll resume her feedings and re-assess her the next day, or the day after that, or the day after that. They are in absolutely no rush and they want to be sure that she is ready and that we are ready for her to try to breath on her own.
The people here are truly amazing. We had a big sit down this afternoon with two of Brynna's doctors, her nurse and the chaplin and they helped make things much clearer for us regarding next steps and the decisions we may or may not have to face. We are blessed to have these people in our lives and to be doctoring at this hospital.
I think that's it for tonight. I'll update tomorrow regarding how the day went!
One last note. Thank you to everyone that said a prayer for little Faith. She went home today! We will continue to pray that God will keep that beautiful little girl safe in the arms of her loving family.
Love and God Bless - Pete, Alisha, Zach, Lexi, Brynna and Chelsey
Monday, June 26, 2006 10:03 PM CDT
Better day today (Or at least, less stressful!). Last night before we went to bed, Brynna opened her eyes and looked at us. It scared me to death! I had leaned down to give her a kiss and her eyes popped open. I kind of jumped back and turned around and said to the nurse "She just opened her eyes, is that okay?!" She laughed and said it was just fine. We had assumed that through the next couple of days while she was sedated and intubated that she would be totally unresponsive. Needless to say, seeing her beautiful eyes and having her respond to us with a shake or nod of her head was just what we needed to give us a boost. She's been responsive throughout the day today as well and we've enjoyed talking with her. She's been able to reassure us that she is comfortable and not in pain and let us know when she is too hot or too cold by nodding yes or shaking her head no when we ask her. Of course we don't want her to be too alert and many times when we asked her a question she would nod off to sleep before she would answer us. That's good because we really do want her to rest. Our typical Brynna is shining through though because about every time we told her she needed to rest she would shake her head no. She has been doing that for a while, making a big deal of rolling her eyes and telling us no she wasn't going to do it when we would tell her she needed to rest or take a nap. We know our sweet girl is still with us and still fighting. The best part for me is when she nods her head when we kiss her and tell her we love her.
Medically she had a busy day today. This afternoon they put her PICC line in. That will enable her to get rid of at least two of her three other IV's. They'll probably keep at least one of them in just in case, but just for a short time. The PICC line is a more permanent IV that they'll be able to use to give her meds and they won't irritate her veins like they do with the other IV's. They'll also be able to use it for her blood draws so she won't have to have so many pokes. When they put it in, the line fed in the wrong direction, so they've been in 4 more times, twice to pull the line back and twice to do x-rays to see where it is at. Hopefully, with this last change, it is where it needs to be now. They also decided to draw a sample of the fluid in her lungs so they could culture it and find out exactly what type of infection she has to be sure they are treating it correctly. I don't remember what the procedure is called, but basically they pumped fluid into the bottom left quadrant of her lungs, swished it around, then sucked it back out. Her nurse was with her during the procedure and she said they were suprised at how good her lungs looked and most of the fluid they got out was clear and didn't look infectious at all. We're hoping that's a good sign, but they thought they would have results from the cultures within 24 hours so we'll know for sure late tomorrow or Wednesday morning. We don't know yet when they will consider trying to extubate her. We may find out their plan tomorrow morning. The only thing we know for sure that they will be doing tomorrow is an EEG of her brain. It's a non-invasive procedure and shouldn't stress her at all, so we are hoping tomorrow will be a quieter, more restful day for her.
One small request. In addition to keeping Brynna in your prayers, please add a beautiful little girl named Faith and her family to your prayers. She is a spunky little 2 year old (same age as Chelsey :0) with big dark eyes, curly dark hair and an angelic smile. She had a liver transplant when she was just 3 weeks old and she is going through her second battle with infection that is threatening to take her liver. Her dad came up to us yesterday when he was walking Faith around and asked us if we were alright. We told him our story and he told us theirs. We could see how special his baby girl is to him. Although they are going through tough times themselves, he encouraged us and said "You're going to be okay. You are in a lucky room, God is always in that room." He didn't say, but we assume Faith must have been in our room the first time they were here and she got better. Please pray for healing for Faith and strength for her Mom, Dad, and brothers.
Thank you again for all the love and support. Thanks to those of you that are helping my mom and dad out with the kids and keeping the home fires burning!
Love and God Bless - The Peters
Sunday, June 25, 2006 6:13 PM CDT
Major setback. Today has not been a good day. Brynna slept soundly through the night, but when she started to wake up this morning she had a really hard time coming out of it and her breathing started to get more difficult. Her breathing continued to worsen and she started seizing regularly. The team of doctors decided that they wanted to do a CT scan to see if there was any swelling or bleeding in her brain which was causing the seizures. At first they told us that if they did the CT scan they were going to have to sedate her and intubate her in order to do it safely, and the onocologist that examined her told us at first that if they intubated her she would most likely not wake up again. The doctor in charge of the unit consulted with the resperatory therapist and they decided that the therapist would go along to the CT scan and make sure that she kept breathing. As we walked along with her to do the scan, she quit breathing on her own and they had to help her breath, but she did start breathing on her own again. The results of the scan were positive. There is no apparent bleeding or swelling in her brain. However, once she got back to her room, her breathing became extremely stressed and she was fighting for every breath so we decided to intubate her. The doctor in charge of the ICU assured us that it is entirely possible in a few days that they will be able to remove the tube and Brynna will breath on her own again, which is a much more positive outlook than the one the onocologist gave us. For the next couple of days they are going to keep Brynna heavily sedated and give her a bunch of medicine to control her seizures so that she can work on getting stronger and breathing on her own again. At this point, they believe that by keeping her seizures under control, working at getting the extra fluid out of her body and lungs and making sure that they've taken care of any pneumonia she might have that she will be better again in a couple of days and they will be able to take the tube out.
It has been a very hard day emotionally and we are greatful for the friends and family that came to see Brynna today and strengthen us with their love.
I'll update again tomorrow if we get anymore news.
Love and God Bless you all!
Pete, Alisha, Zach, Lexi, Brynna and Chelsey
Saturday, June 24, 2006 9:43 PM CDT
Small setback. As I type this, Brynna is in the Pediatric Intensive Care Unit at Mayo in Rochester. Thursday night Brynna started having a harder time breathing. Since we had started her on the new pain medication and the medicine to get rid of the excess water in her body, we were afraid that she was having a reaction to one of the medicines so we decided to take her into the emergency room. Once we got there, they immediately put her on oxygen and she showed a remarkable improvement. She was more responsive, she was able to open her eyes more easily, and she could talk more clearly than she had in days. They took a chest x-ray, but couldn't tell for sure whether she had something going on there so rather than sending her home with oxygen they decided to admit her so they could figure out what they were treating. When Brynna's regular pediatrician saw the x-ray she thought right away that she had pneumonia and so they gave her two shots of heavy duty antibiotics. They did more x-rays in the late morning and when Dr. Johnson compared the two she thought the fluid in her lungs looked a lot worse than it did earlier so she made the decision to transfer her to Mayo. They transferred her via helicopter Friday evening and Pete and I drove up. They checked her heart right away and made sure that it was working properly and not contributing to the fluid build up. They took more x-rays and decided that they weren't sure if she had pneumonia or if the areas of her lungs that were white were collapsed due to the pressure from her abdomen. They've continued to treat her with IV antibiotics, but not as agressively as they started out because they are pretty confident now that it's more of the collapsed lung than an infection. As usual Brynna has been a trooper through all of the shots, the IV and all of the blood draws. When she left on the helicopter ride without us, she wasn't upset, she just yelled "Good-bye and I love you!" as they were loading her up and we were walking away. She's actually been feeling pretty good, has been getting restful sleep and breathing easier. Tonight we ordered a great dinner from a restaurant across the street from the hospital and had a "family table", according to Brynna, where we all tried each others food. Over all we were having a pretty good day, but at about 8:30 Brynna had two seizures back to back that lasted longer than 5 minutes each. She has had small seizures a couple of times over the last few months, but they didn't last very long and she hadn't had one for awhile. The gave her a drug through her IV to stop the seizures and it's knocked her out. They think she'll be sleeping for the next 4 to 6 hours so I thought I would do a quick update. They've done a blood draw to see if her electrolytes are low from all of the fluid she's lost today which may be what caused the seizures, but we're still waiting for the results. I'll try to get another update done tomorrow to let everyone know what we found out. To end on a positive note, Brynna's weight from yesterday morning to this morning decreased by 5 lbs. from the fluid she's lost with the diuretic she is taking which is what we want to happen. Overall today she's lost almost 2 liters of fluid! Already her feet and stomach are less puffy, so we hope this continues and she can start feeling more comfortable and more like her old self.
We remain positive that we are in the right place and that everything happens for a reason! We've even kicked around the idea that maybe they will want to put her on the Valproic Acid for her seizures now and that maybe it will have the added benefit of continuing to shrink the tumor.
Keep us in your prayers and I'll update again tomorrow when we hopefully know more!
The Peters
Wednesday, June 21, 2006 10:00 PM CDT
In spite of our worries that Brynna's symptoms were getting worse, we got great news today! Brynna's tumor has shrunk since her MRI in March, which means the chemotherapy (or something) is working. The doctor was as suprised as we were because of her worsened condition and wasn't entirely sure why that would be, but she did think there may be a few different contributing factors. First of all, with Brynna's low platelet count, the blood vessels that have been left behind from the dying tumor cells have burst and bled into the tumor. Brynna will recover from this as her body gets rid of that blood, but it may account for her getting so much worse in that last couple of weeks. Dr. Wetmore thinks that another contributing factor is the amount of steroids and chemotherapy she has in her body and the toxicity of that. Since we've bought some time with the tumor shrinking, the plan is to give Brynna a break from the chemotherapy this month and try to reduce the amount of steroid she is taking in order for her body to recover. The steroids and the chemotherapy are responsible for making her bones weak and the steroids are also causing her muscles to be weak. Reducing the steroid will hopefully help her get stronger so that she will be able to talk easier and feed herself again. We are also going to give her some medicine to try to reduce the amount of water she is retaining and decrease the puffiness in her face and tummy which the doctor thinks is contributing to her trouble breathing. Finally we are going to start giving her medicine that the orthopedic surgeon recommended to increase the calcium and density of her bones. Our biggest concern now is quality of life for Brynna and trying to get her feeling better and stronger. Right now, at least for me, the outcome of the appointment seems surreal but hopefully we'll start seeing some postive results in a couple of weeks and then we'll be able to see for sure that Brynna is getting better.
The doctor said today that the reason everything is a mystery to them is because they rarely see this stage in this type of tumor. Most people with this type of tumor don't live this long and Brynna is doing remarkably well. She said herself that she doesn't know if it's the chemotherapy that is working or something else, but she believes strongly in the power of prayer and she knows we have a lot of people praying for us. Please keep the prayers coming, because they are obviously working!!!!!
Thank you so much for keeping us in your thoughts and prayers, Brynna is truly blessed to have all of you praying for her and you strengthen us with your prayers too!
Love and God bless you all - Pete, Alisha, Zach, Lexi, Brynna and Chelsey
Monday, June 19, 2006 9:28 PM CDT
Hello to all. We just wanted to give you a quick update to let you know that we will be heading to Rochester with Brynna this Wednesday, the 21st. They will finally be doing an MRI to see exactly what is happening with the tumor in regards to the chemotherapy she is currently on. We're afraid that we already know the answer to this. Brynna has gradually been getting worse instead of better, which is a pretty good indication that the chemotherapy isn't working. I talked to her doctor a few weeks ago, which is when we decided to go ahead and do an MRI to see exactly what is going on. She let us know at that time that a new study has opened up that we may be able to take part in. A drug that is used to treat seizures has shown some success in shrinking tumors in other parts of the body, so they have just started a test to see whether it will work on brain tumors. The side affects of this drug are essentially the same as the chemotherapy that she is currently on, which is a much better alternative to the only other drug that is available to treat Brynna's tumor. With this, we have renewed hope. Please say an extra prayer for Brynna and our family on Wednesday, that the outcome of the appointment will be a positive step forward for all of us.
Thank you and God bless!
Pete, Alisha, Zach, Lexi, Brynna and Chelsey
Monday, May 22, 2006 1:10 PM CDT
Once again, a long overdue update. I know that many of you check regularly for an update and are disappointed when there isn't any news. Please understand that with so many ups and downs with Brynna, it is very hard to know what to write here and very hard to stay positive. The last month has really been a roller coaster as far as Brynna's wellness has gone. Since my last update we've battled a terrible cough, double ear infections, chronic constipation and excruciating back pain. We just found out last Thursday that Brynna has a compression fracture in one of her vertebra and that is why she has been in so much pain. Believe it or not, when Brynna found out she had a "broken back" she laughed harder than we've seen her laugh in months. She had Pete and I in stitches because she got such a kick out of it. Her reaction to the news really shows how brave, upbeat, and strong she is. Not many people could laugh in the face of what she's been going through. She's going through days where she screams with pain every time we move her. The orthopedic surgeon that examined her said that after three weeks the intense pain usually goes away, but she may have some pain for 2 to 3 months. They have her on a really strong pain medication now and we are going to start physical therapy this week in hopes that they can help with the muscle spasms she is having as a result of the fracture. It's already been about 3 weeks that she has been going through this, so hopefully we'll start to see a little improvement every day now. We had another diappointing visit at Mayo last week. We have felt that Brynna has been improving and a few people had commented on how much better she looks. We had started decreasing her steroids, first by a half a pill for 5 days with no noticeable change and then by another half a pill. The day we went to Mayo was the 4th day of that decrease. The appointment was in the early afternoon which is when Brynna usually rests so she was tired. She was also in a lot of pain from her back because she was due to have another dose of Motrin, which is how we were treating her at that time. She was panting and her heart was beating fast and her doctor said that it could have been from the pain, but could also be related to pressure from the tumor so she thought we should increase her dose of steroids again. She said she didn't think the Temodar was working and that if she's not better by the next time we're there we may have to consider doing something else. As far as we know, the something else is a chemotherapy that would have to be administered in the hospital intraveneously and it would make her lose her hair and make her sick. Needless to say that is not an option we want to have to pursue. Our hope is that the only reason the doctor was so negative is because she only saw a snapshot of how Brynna has been doing on that day and not the whole picture of how much better she is now than she was a month ago. I know this sounds like a lot of bad, but we haven't had all bad days. In spite of everything, Brynna has been trying to go to school every day and she loves to be out and about and visiting. She loves company and asks every day if anyone is coming over that night. The other day she wanted "800 million visitors, or as many as possible." :0)
I know many of you have been wondering about the success of the benefit as well. Thanks to the hard work of the committee, the donations of so many companies and individuals, and all of the people that attended the benefit, an unbelievable $35,000 was raised for Brynna and our family. That amount is absolutely staggering. There are no words that can express our thanks. We have been truly blessed to have so many people that care about Brynna. It's amazing that she has touched so many lives and the generosity and kindness of everyone humbles us and leaves us in awe. This isn't enough, but thank you, thank you, thank you, to you all.
Love & God Bless - The Peters Family
Tuesday, April 11, 2006 11:23 AM CDT
WALT DISNEY TRIP
I know that you have all been waiting for an update regarding our trip to Orlando. I've been struggling to find the right words, and so have been putting off the update. The trip itself was wonderful! We had so much available to us to do and see, and our relaxation and enjoyment were completely provided for. Make a Wish did everything possible to make the trip worry free for us. They had a limo pick us up at the hotel in the cities and take us to the airport. Both at the airport in the cities and the airport in Orlando, they had representatives waiting to help us through all the processes. They were definitely a God send. I'm sure many of you know how daunting traveling can be, especially to an airport you are unfamiliar with, but they made everything go very smoothly and effortless on our part. The kids enjoyed the plane rides. We had great flights both ways and even Chelsey was really good for the 3 hours we were on the plane. Our resort was absolutely beautiful, the weather was mid 80's and we had sunshine by 11:00 every day. Unfortunately, Brynna was too tired and not feeling well enough to enjoy all of it as much as we had hoped. Brynna enjoyed time that we spent at the "Give the Kid's the World Village". We got to have our picture taken with Mickey and Minnie and meet some of the other Disney characters. She got to see Santa and Mrs. Claus one night. The kid's all got lots of wonderful gifts! Brynna got to make a star that the star fairy put up on the ceiling of the castle one night. There was a carousel and game room too, but the best part of all was the shop where you could get as much ice cream as you wanted anytime you wanted! Brynna was able to do the parks the first 3 days, so she got in some rides and shows at the Magic Kingdom. At Sea World she got to see animals and a couple of shows, of which the "Pet's Ahoy" show was her favorite of the whole trip! For those of you that know Brynna and her love of animals I'm sure this comes as no surprise. It's a show that features mostly animals rescued from shelters. There were cats, dogs, mice, ducks, geese, a pot bellied pig, and a skunk and the training of these animals was absolutely amazing! We video taped the show, so were able to bring a bit of it home with us. At Animal Kingdom we got to see a 3D show called "It's Tough to be a Bug" and walk through some of the jungle areas where they had different types of animals, and Brynna really enjoyed the safari and capturing the poachers! After that though she was done with the parks and the crowds and spent the rest of the vacation taking it easy at the resort. I stayed with the other kids and my mom and dad the afternoon that we were at Animal Kingdom and Pete and Brynna went back to the resort, so the big kids got to enjoy more of the rides. On Monday, Pete took Zach and Lexi to Epcot to enjoy some of the wilder rides too. Overall, I think we can all say that it was fun and that we had great family time together.
UPDATE ON BRYNNA
As I already said, the trip really wore Brynna out. On Monday night before we left Orlando she got sick and then got sick in the airport on Tuesday. She didn't get sick on Wednesday and even felt up to going to school that afternoon when we got back from the cities. She got sick again on Thursday though and spent the majority of Thursday and Friday in bed. On Saturday Pete's sister Jody and her family came to visit and Brynna had more energy and was feeling better, but she started to cough and was worse on Sunday when Pete's mom came to visit. It seemed like she had a cold in her chest. On Sunday night I took her to the emergency room because she was struggling for air and we were concerned that she may have fluid in her lungs which is something the doctor had warned us about. We were reassured to find that wasn't the case and that it was just congestion in her throat. She can't take deep enough breathes to cough it out, so just keeps coughing and the coughing wears her out. We started giving her Benadryl in the hopes that it will dry up the congestion. We had Brynna's follow up appointment in Rochester yesterday but really didn't find anything out regarding her condition. On the one hand the doctor thought that the congestion in her chest and the being sick was related to the progression of the tumor, not a bug, which was discouraging. But she also said that it was hard to tell at this point whether the chemotherapy is working or if the steroids are keeping her where she is at. She said that the chemotherapy is not fast working and that we wouldn't see a remarkable improvement right away but that it might keep her where she is at. The biggest concern we have now is the possibility of Brynna asperating and taking fluid into her lungs which could cause a life threatening situation. We will start another round of the chemotheraphy tonight and while the appointment did not offer us much in the way of encouragement or hope, we continue to hope and pray that the medicine will work and shrink the tumor so that Brynna can start to improve.
Please know that we so appreciate all of the cards, gifts and words of encouragement that we receive every day. Everyone is doing so much for us and we can't begin to thank you all. We know that God has given you to us to help give us the strength to get through these tough times. Thank you for keeping us in your prayers.
Love and God Bless - Pete, Alisha, Zach, Lexi, Brynna and Chelsey
Friday, March 24, 2006 6:02 PM CST
Brynna's "Make a Wish" has been granted! We leave for Orlando early Wednesday, 3/29. I checked the 10 day forecast for Orlando this morning and it is calling for mid 80's and "abundant sunshine" the 29th through Sunday the 2nd. Today, through the Tuesday before we leave, it is supposed to be in the mid 60's so I think someone ordered up sunshine just for us! We want to say a big thank you to Kristen Helfinstine, our wish coordinator, for getting this scheduled so quickly for us! It was also a pleasure meeting Kristen's parents, Dave & Karen. They are the ones that came and visited with Brynna regarding her wish. They are definitely a very special family.
Brynna is doing very well. Last Saturday was a very bad day for her. She woke up that morning and could hardly open her left eye and both of her pupils were twitching constantly. As a result, she felt dizzy and nauseous all day and could hardly stand to have her eyes open. Pete's sister Sandy and her husband Sam were here for the day and we had plans to spend the night at a hotel in LaCrosse and go swimming. We still did all that, but it was hard for Brynna to enjoy herself because she felt so miserable. Sunday morning she woke up showing no signs of the previous days troubles, which was a huge relief! It seems like every day since then she has been the same or a little better. Yesterday, she had her blood drawn in the morning, which was "no big deal". I never even heard her say "ouch" when they poked her! After that she wanted to go right to school to have lunch with Lexi and she spent the remainder of the afternoon in class. That is the longest she's been out and about and active since she started showing signs of the tumor growing again. To top it all off, last night she went shopping for 3 HOURS!!! After we shopped we "FINALLY" got to go to Coldstone for ice cream. It was a really big day for Brynn, but she really didn't show any signs of wear and tear from it. We are hoping that is a positive sign. Her doctor has said that over the next few weeks she would continue to get worse and either stablize and start to get better or continue to get worse. We had been seeing a slight decline every day up until the worse day last Saturday, but it seems like this week she has maintained or gotten a little better each day. Please, please keep those prayers coming! It seems they are helping! If this is a sign that the medicine is working and she is on the mend, hopefully by the time we leave next Wednesday she will feel even better and have even more energy than she has now.
Now, for the most important yet hardest part of this entry. In the last two weeks, we have been inundated with gifts and well wishes from many people we know and others we don't know. The hard part is not even beginning to have the words to express our thanks and appreciation. I don't even know where to start. There are a few really big thank you's we need to say, but our appreciation for all of the other tokens of kindness is no less heartfelt! First of all, we would like to say a HUGE thank you to our dear friend Sue Duffy. I'm sure I can't even scratch the surface of what she has been doing for us. She's arranged meals, arranged time for me to get out of the house, has coordinated donations, the list goes on and on. We are truly blessed to have her as a friend. I know that what she is doing takes a huge amount of time and energy and we want her to know how much it means to us. Another huge thank you goes to John and Deb Brostrom, who donated the money for my parents plane tickets to Orlando. Make a Wish pays for our family, but Mom and Dad are going along to help with Chelsey and they were going to have to pay for their plane tickets and park passes. John told me they didn't want any recognition, but what a huge act of kindness for people you don't even know! Employees of his company, LaCrosse Management Systems, Inc. also donated money towards our "Disney Fund". Another special thank you goes to the 27 "un-named people" that donated gift cards so we could go shopping for new summer stuff for our trip. We were told that these people don't know us, only know of our situation and wanted to do something for us. We had a great time shopping last night and will be styling for Disney so thank you, thank you, thank you! Thank you to Tom and Judy Ingvalson for the freezer full of meals they brought over yesterday. As I said, all of the other donations, meals, gifts and words of kindness are no less appreciated. Every time we went to the school this week, there were boxes and boxes of art supplies for Brynna. Her classmates and their families have given Brynna many wonderful gifts. Many people whose names I don't know gave money at the book fair so the kids could pick out things to keep them busy on the plane. We received a card and money today from Ed and Jan Peck from Pennsylvania. We unfortunately have never had the pleasure of meeting them, but they have held Brynna in their prayers for the last two years. The Peli School teachers and board members just dropped off a bag of fun stuff to do at home and on the plane. To those of you I may have inadvertantly missed, please forgive me. What you have done has not gone un-noticed and we hold you in our hearts!
I will update again before we leave for Disney and let you all know how Brynna is doing. Please continue to pray for strength and wellness for her for this very special trip and healing as we go forward.
Thank you again and God Bless to all!
Love - Pete, Alisha, Zach, Lexi, Brynna, and Chelsey
Wednesday, March 15, 2006 3:01 PM CST
Brynna completed her 1st round of chemotherapy with no apparent adverse side affects, which was truly a blessing. She's gotten weaker in the last week and at times has trouble walking. She's also having some trouble breathing, which is the scariest thing for us. Brynna is scared at times and very frustrated by not being able to do the things she loves to do, but overall is still the brave, caring and amazing little girl she has always been through this. I've taken an indefinite leave of absence from work to be at home with her as much as she wants me to. Pete took some time off today to get her out of the house and do something fun. They visited Toys R Us and Walmart and came home with something new to play with. Last week was our spring break and she hasn't been back to school this week, but Pete, Brynna and I are going to meet with her teacher and other faculty at the school on Friday morning to talk about getting her back in school at least part time. She is hesitant I think because of her lack of energy, the trouble walking and just the fact that she's different now, but we're hoping that her teacher, the nurse, and the guidance counselor at school will help her change her mind about being there and getting back with her friends. Because she is limited in what she can do, she gets easily bored at home and I'm hoping that getting back to school will be a good diversion for her. The nurse at school told me that they want to do whatever is best for Brynna and that she and I could just visit a couple of hours a day to get her back there. As for occupying her at home in the meantime, my work has loaned us a laptop computer and several of our friends have let us borrow computer games so she can have something new and fun to do while she is resting on the couch. We are going to switch out 5 or 6 games a week so she has something new to do and won't get so bored with it. I put in a request at work earlier in the week to see if anyone had puppies or knew anyone that had puppies that Brynna could go and play with. The response from everyone was overwhelming and as you can see from the new pictures, we were successful! The puppies she got to play with belong to a family from our church that Ted and Sue Duffy knew. Sue got us hooked up. I can't say thank you enough for the connection or to the Lobergs for letting us play with the puppies. That little bit of puppy loving brought the most joyful smile to Brynna's face than we've seen in a long time. The Lobergs told us we could come see them anytime, so the first words out of Brynna's mouth this morning were, "Are we going to see the puppies today?!" I also got in touch with the Human Society through one of my co-workers and they are going to do Pet Therapy for Brynna and bring a dog or some dogs over to visit her at home. We are truly blessed with friends, family, our church family and so many others that have offered their help and their prayers for Brynna. On Saturday morning a volunteer from the Make a Wish foundation is going to visit us to talk with Brynna about her wish. We are trying to expedite it, so Brynna can still be feeling well enough to enjoy it. Her wish was to go somewhere that she could ride rides, see or play with animals, and go swimming because those are here favorite things to do. The woman that I spoke to last week thought that Disney World might be a good option because she can ride rides at the Magic Kingdom, see the animals at the Animal Kingdom and Sea World, and swim at the resort. We'll hopefully know more on Saturday though. We don't know what the next few weeks are going to bring, but we want to say a big, heartfelt thank you for all of your prayers and support. You help make such an unbearable time in our lives a little easier to deal with.
Love and God Bless!
Pete, Alisha, Zach, Lexi, Brynna and Chelsey
Tuesday, March 7, 2006 9:48 PM CST
We need to ask you all to once again raise up your prayers for Brynna. We did not get good news at her appointment in Rochester today. Brynna's tumor has started growing again. We will be starting her on an oral chemotherapy tomorrow that she will take at home for five days every month. They told us it won't make her lose her hair and are hoping it won't make her sick. She will be taking anti-nausea medicine to help with that and she is taking steroids again to help reduce the swelling on her brain. Over the past 3 to 4 weeks she has been having headaches and in the last week had started showing signs that this was a possibility. Her right side weakness has increased and she has been having trouble swallowing as well as being just plain worn out. The doctor has said that she may get worse before she starts getting better, so we're praying right now that that isn't the case and that the steroids along with the chemo will ease her symptoms and she will be able to get some of her pep and energy back. We will know in four to six weeks if the chemotherapy is working. Brynna is a little scared, but we are reassuring her that we are giving her the best medicine there is to fight the bad cells and that we need to trust in her doctor and in God. We believe that we got the two strong years we've had because God heard everyone's prayers before. Please continue to pray that God will give her strength and healing again.
Love and God Bless - Pete & Alisha
Tuesday, October 11, 2005 6:10 PM CDT
A little belated news for everyone. We had Brynna's follow up appointment in Rochester last Tuesday and again, with a deep sigh of relief, there was no change. We had anticipated and actually dreaded trying to do the MRI with only sedation this time, but happily they were set up to do full anesthesia. Brynna prefers it this way too and was ready to go until they mentioned that they were going to have to do an IV. She really hates waking up with that in. We asked if they could take it out before she woke up, but they wanted to leave it in in case of an emergency and wanted to see her drinking fluids before they would take it out. Needless to say, that part of the procedure didn't go well. She dreaded having it taken out so badly that she actually wanted to go home with it in. We got through it though and everything else went smoothly. She is still carrying the battle scars from our visit because for some reason, they had trouble finding veins for the IV and the blood draw. We teased her that they must have used her for a pin cushion. She still has vivid bruises on both wrists and in the crook of one arm. She made it through that like a trooper too and I think enjoyed showing her bruises off to her classmates. In any case, that's a small thing in light of the great news. We only got to see one of "Brynna's girls" this time around because Katie was off for the day and Shelly is on maternity leave with her new baby girl. It was good seeing you again Kasey! Congratulations Shelly and we missed seeing you and Katie! We'll have to catch you next time! As for other news, Brynna started Kindergarten all day every day last month and has fallen into the routine very well. She had one field trip last week to a farm in town and weather permitting will have two this week, one to the fire station and one to a pumpkin patch. She's made a bunch of new friends and talks about them every night and is really liking school in general. Of course her favorite parts are recess and phy-ed. Chelsey is growing like a weed. She is a very smart little girl and I was just telling someone at work that you can almost have a conversation with her because she understands so much and speaks so clearly that you can easily understand her. Zach is just finishing up football. He has one game left and their current record is 3 and 2. Lexi got chosen to be a part of the school newspaper staff so will be doing that once a week throughout the school year. Pete enjoyed TWO trips out to Colorado this fall to hunt Elk. Unfortunately he didn't get a chance to shoot one, but saw a bunch and definitely felt the trips were enjoyable and worthwhile. I spent a relaxing and fun weekend last weekend with Pete's sister Sandy and niece Nicki in Winona. It was parent's weekend at Winona State where Nicki is going to school for nursing and we made it a girls weekend. We've all been doing well and enjoying life! I'm going to sign off for now. The family is eating dinner without me. Brynna goes back to Mayo for her next appointment in February, but I won't wait that long to update again. Love and God Bless to everyone!
Alisha, Pete, Zach, Lexi, Brynna and Chelsey
Thursday, June 23, 2005 6:17 PM CDT
Just a quick update, we're on our way to the pool. Wow is it hot here!!!! Brynna got an A+ on her check up and the scans show no change whatsoever. Hooray!!! The doctor could tell, as we had been seeing, that Brynna's strength and coordination have shown a great improvement since her last appointment in January. They were excited to see that she is doing so well. It was a great day for us! Brynna woke up in a happy mood and ready to go, she went through the MRI great and came out of anesthsia with no problem. After we were done at St. Mary's we went and had lunch with "her gang", the girls that did her radiation treatments. We had a great time with them. Shelly, Kasie and Katie are very special people and we have been so lucky to be able to get to know them through all of this. (They've been part of the silver lining in our cloud :0) Needless to say the results of the appointment with her doctors were the icing on the cake (for Pete and I at least). Now it is business as usual. Brynna started her level 2 swimming lessons yesterday, had lots of fun, and is looking forward to the rest of them. She really is a little fish. We return to Rochester in 4 months and every 4 months thereafter for the next year. They told us today that the next year is a critical time with this type of tumor and they want to be very vigilant. Please continue to pray for healing for Brynna, as we will. We thank God for his blessings on us. We know how fortunate we are to be giving this kind of report a year after Brynna was diagnosed and are greatful for every beautiful day we have. We know that God has heard and heeded all of our prayers!
Love and God Bless to you all. Enjoy your summer!
Pete, Alisha, Zach, Lexi, Brynna, and Chelsey
Tuesday, June 14, 2005 7:26 PM CDT
Just a quick update to let you all know that we were unable to go to Rochester today. We noticed yesterday that the MRI was scheduled at a different hospital than we had been going to. When I called and asked about the change, they discovered that the MRI had been scheduled to be done without anesthesia. We were told that most five year olds can go through the MRI without anesthesia, so the doctor that scheduled it assumed that was the case with Brynna. Brynna has a high level of anxiety when it comes to anticipating what is going to be done to her and we are afraid that she wouldn't be able to handle going through the MRI awake. As it is right now, she was disappointed when she found out that we had to reschedule. She had "really been looking forward to going" and was hoping for a cancellation for the anesthesia doctors so they could still fit her in. We don't want her to have a bad experience and have to drag her kicking and screaming everytime we have to go back in the future, so when they couldn't fit her in we decided to reschedule. We will be going next week on Thursday instead. I'll do an update after our appointment on Thursday to let you know how it went. In the meantime, please say lots of prayers for us. God willing we will get a good report again!
Love and God Bless you all!
Alisha
Tuesday, June 7, 2005 7:12 PM CDT
I know it's been awhile since I've updated Brynna's page. In this case, no news is good news. We are scheduled to return to Mayo for Brynna's next MRI a week from today, but we are very encouraged by watching Brynna every day and seeing how well she is doing compared to last summer. She is jumping rope, climbing ladders, swinging on swings, all things she couldn't do last year. She even played soccer this spring. She couldn't quite run as fast as the other kids, but it didn't discourage her at all. She was her team's last line of defense by hanging back and waiting for the other team to get the ball. She even asked me a couple of days ago if I could sign her up for summer soccer. Summer soccer here is a competitive league that they don't start until they are 10 or 11, so needless to say she was a little disappointed that she couldn't play this summer. School is out for us, much to Brynna's dismay. She can hardly wait to start all day every day kindergarten in the fall. If she had her way, there wouldn't be a summer break! (How quickly that will change, right?!) We're letting her stay at home with Zach and Lexi one day a week, today they went to the pool with our neighbor across the street and her kids. LeeAnn is our angel in disguise, she even offered to pick Brynna up from daycare and take her to the pool with them when they go. Brynna, Chelsey and I spent almost every day at the pool last year while I was off, so Brynna will be missing that this year. I know that we'll be spending some evenings and a lot of weekends at the pool this summer, but hopefully this will help keep her from missing the daily trips too much. The latest news for Brynna is that she got glasses last Thursday! I keep having to do double takes when I look at her. She looks so grownup and so darn cute in her glasses! I'm going to go eat dinner now, but plan to come back after and put new pictures on the web site. Thank you all so much for keeping us in your thoughts and prayers. We know that with faith and hope, Brynna will have continued healing and the tumor won't grow again.
Love and God Bless you all - Pete, Alisha, Zach, Lexi, Brynna, and Chelsey
Tuesday, January 4, 2005 8:35 PM CST
Yeah!!!!!!!! We got great news!!!! Brynna's MRI showed no evidence of recurrence, no tumor regrowth. We don't have to return for her next MRI until May. We do get to go back Monday for the removal of her port, which she is very excited about. I can't begin to tell you what an awesome day this was for us. I think God gave us little signs all through the day that it was going to be positive. This morning when I got up to shut off my alarm, the only legible words I heard the announcer say were "It's going to be a great day!" Brynna herself was incredibly energetic and happy today, just like the old Brynna. On the way to Rochester she kept saying, "I just want to get there and get it done with because I want to go eat!" In the MRI waiting room she was dancing around and being silly. She had Pete and I in stitches and we couldn't help but relax a little. After the MRI, she had the best recovery from the anesthesia that she's ever had. She was quiet and calm when we went back to see her and never fussed or complained a bit, not even when they took out her I.V. After we left St. Mary's we went to Toys-R-Us so she could spend her Xmas money and of course it was great fun for her picking out things she wanted. After we ate, we went back to Mayo and saw "her girls". While we were chatting with them, she was running up and down the hallway. We think she did about 15 laps. We haven't seen her with that much energy in a very long time! When we got up to our appointment with Brynna's doctor, we barely had time to sit down and they were calling us to go back. I have to admit I was holding my breath and thinking, "Did they call us back so quickly to get the bad news over with?" But the first words out of the doctor's mouth were, "Brynna you look great, you are doing great!" I think Pete and I practically collapsed with relief. We've overcome another big hurdle thanks to everyones' prayers. Please continue to keep Brynna in your prayers as well as Bethany Buzynski. We know the difficult road ahead of her and her family, but we also know firsthand the miracles that faith and prayer can bring. We'll pray for God's blessings on Bethany as well.
Love & God Bless - Pete, Alisha and family
Monday, December 27, 2004 10:38 PM CST
As you can see, Santa had quite a surprise in store for Brynna! Meet Sugar, the newest addition to the Peters family. With some help from a true Santa and his helper (one a benefactor that we are not allowed to find out the identity of and the other, Mary, whom we took riding lessons from) this was accomplished in approximately two weeks time. Since Sugar wouldn't fit in his sleigh, Santa delivered her ahead of time to the stable (horse hotel per Brynna) rather than having her under the tree and left a treasure map for Brynna so that she could find her way there. The route was marked with landmarks Brynna would recognize and red ribbons on street signs so she actually led us all to the "treasure". Once there, I don't think she could actually believe that Sugar was hers. It didn't sink in until we were on our way home and she leaned over and whispered to Chelsey "I have a real horse!" Of course Chelsey responded with her usual enthusiasm for anything Brynna has to say to her. She gave her a big grin and a squeal. We visted Sugar 4 times throughout the weekend, a couple of times bringing friends so that Brynn could show them her "real horse"! She will thoroughly enjoy taking spins around the arena, especially since she can watch herself ride in the mirrors they have along one wall there. I have to apologize for the quality of the picture. My Christmas present from Pete and the kids was a digital camera and I haven't figured out how to properly edit the pictures yet.
Just a quick update, we go back to Rochester on January 4th for Brynna's next MRI. We also have an appointment on the same day with her doctor there and a consult with a surgeon to discuss the removal of her port. This was news that Brynna gladly received because it bothers her at times. I will post a new entry that day letting you know how things went. Please keep us in your prayers as we are looking towards that appointment with a lot of trepidation and worry. We hope that it is just one more stepping stone on the way to continued healing for Brynna. We also would like to ask you to include in your prayers Bethany Buzynski and her family. They are friends of ours that just learned that Bethany has a cancerous tumor and will have to undergo intensive chemotherapy treatment.
We hope you all had a wonderful Christmas and that the New Year is blessed and prosperous for you!
Pete, Alisha, Zach, Lexi, Brynna and Chelsey
Tuesday, September 21, 2004 8:22 PM CDT
After many very anxious weeks and an hour and a half wait to see the doctor.... We got great news! Brynna's tumor has definitely shrunk. It is so apparent to us that God is looking out for us and has heard all of your prayers for Brynna. Each day is truly a blessed gift and we are looking forward to the joy and celebration of her 5th Birthday on October 19th, a happy Halloween, a truly thanks filled Thanksgiving and a blessed Christmas with our beautiful little girl. Brynna will be due for her next MRI after Christmas and our faith is renewed that we will continue to have positive results. I will write more in a day or two when I get a chance. I just wanted to pass along the good news. I know you've all been waiting anxiously. Thank you again for all the prayers and support. We know that God's grace has been helped along by your uplifted voices and our hearts are overflowing with gratitude!
Love and God Bless you all!
Pete & Alisha
Saturday, August 21, 2004 9:34 AM CDT
I hope everyone got a chance to read our thank you from my previous journal entry. I left it on here for a while to give you that opportunity. If you didn't get a chance to see it, just click on "Previous Journal Entries", it's still there.
We had Brynna's first follow up appointment this last week on Tuesday. We approached it with a lot of fear because we had been seeing some changes in Brynna since the weekend of the benefit and were concerned that they meant her tumor was growing again. She had been very tired, sleeping 10 hours at night and taking naps during the day (With Brynna, napping is usually not an option!), getting her to eat has been a major battle, and she had quit using her right hand again for the most part. It was a relief to hear the doctor say that it is unlikely that the tumor would be growing again so soon and that she thought we were seeing these things because we tapered the steroid Brynna was taking too quickly. When the doctor told us initially that we should start tapering the steroid, she explained that when someone is taking a steroid, their adrenal gland quits producing it's own steroid. In order to get it working properly again, you have to taper the steroid gradually so the body can work up to producing the amount of steroid it needs by itself. She told us that the obvious signs that we were going too fast would be Brynna getting a headache and a stomachache. At one point when we were giving her a dose every other day and tried to go to a dose every two days, this is the reaction we got. The second time we did that, Brynna seemed to be fine so we stopped giving her the steroid completely. Now, the doctor has had us put her on a small dose for 3 to 4 days and then taper to every other day again. She said that some people have to be on a small dose every other day for 2 months in order for their bodies to adjust. She thought that she should perk up after the 3 to 4 days, and it does seem that her energy level is better already. Last night we went out to dinner with some friends and one of them had to do the same thing with a steroid she was taking. She said she experienced the same symptoms Brynna has been experiencing when she missed a dose, so that is reassuring. Overall, after her examination the doctor said that Brynna looks excellent and that clinically she is perfect. I can't explain the joy and relief we felt driving home that day. It's as if a huge weight has been lifted off of our shoulders. We will have Brynna's follow up MRI on September 21st. Our hope is to see shrinkage in the tumor, but the doctor said it would be fine if it even looked the same size. What we don't want to see is an increase in size. We'll be praying for great results!
Last weekend we spent 5 days at Pete's sister's in Pewaukee, WI. Their house is on the lake, so we got to enjoy a lot of water sports. Brynna loved the jet ski rides and even tubed behind the jet ski. I'll add some pictures from that weeked when we get them developed. We also went to the Milwaukee Zoo on Monday. The weather was perfect and it was a fun day for everyone. This last week we've been getting geared up for my return to work and the kids starting school. Brynna and I went school supply shopping on Thursday night. She is very excited about starting preschool. When we were leaving the store she said "Mom, everything I got is cool! I didn't get anything disgusting, I mean nothing is ugly. Everything I got is cool!" I was really glad to hear that nothing I bought was "disgusting"! On Thursday Brynna and I started our horse riding lessons. I think Brynn did a better job then me! She rode by herself, but the horse was on a lunge line that Mary held on to in order to control the horse. Mary said that she did better than a lot of six year olds she teaches. She's not sure if she will be strong enough to steer the horse by herself because of her size (her feet barely reach past the saddle :0), but she was able to get the horse to stop and go by herself. She really loved the lesson and can't wait for her next one. She's already wondering if Mary can teach her to jump her horse!
I guess that is all for now, but I did want to let everyone know that our email address has changed. It is now petehuntin@acegroup.cc. I also want to tell everyone about a website you can access that has pictures of the kids on it. A friend of mine has started her own photography studio and she took pictures of the kids for us the day of the benefit. She also donated a few sitting sessions and pictures for the benefit raffle. She has a page dedicated to Brynna and will eventually have a little biography about Brynna on there. I'm supposed to write something for her, so that is why it's not on there yet. She is incredibly talented as you will see when you go to her web site. The link is atplaydigitalphotography.com.
Love and God Bless - Alisha
Saturday, August 7, 2004 11:50 AM CDT
First of all, let me apologize for not updating the page earlier this week. I know that a lot of you have checked in for an update since the benefit and have been disappointed not to find anything. We've had a very busy week, but to be honest I've been struggling all week to find the words to sufficiently express how we feel about last Saturday night and the overwhelming support we had from all of our friends and family. It is estimated that there were between 550 to 600 people there that night and that between the benefit and other donations, approximately $18,500 has been raised. The number of you that took time out of your busy lives to be there for Brynna and us and the generosity you have shown is truly incredible. My catch phrase for that night was "...it's amazing" and it really is. A number of people said to us that night "This is what you get for being from a small town." That is so true. Even though Pete and I moved away from Readlyn and Waterloo/Cedar Falls 5 years ago, the friends we have there still remain dear to us and the benefit really represented that sense of community that comes from growing up in a small town. I want to mention here the people that put the benefit together. I know that it took them a lot of time and hard work to pull it off and make it run so smoothly. The people on the commitee were Pete's sisters Jody Delagardelle and Nancy Kleitsch, and friends Dave and Kathy Shook, Mark Boevers, and last but not least, Tom and Karen Kuhlman. In addition to those that organized the benefit, I know there were a lot of volunteers that donated prizes and items for the silent auction, helped in setting things up, running the kids games, and serving the food. We truly owe all of you a huge debt of gratitude for everything you've done. We'd like to express a special thank you as well to those of you that came from a long ways away to share that night with us. Again, the support that everyone has shown is incredible. Our intention is to use some of the funds that were raised to get us caught back up from Pete and myself being off of work and are thinking about taking the family on a special vacation. Brynna will be eligible for a Make a Wish and we may have a trip with that, but we are thinking about going out West so that she can see the mountains. Our hope is that we will never have to use the money for further medical treatment and that it will make a nice start to a college fund for Brynna. God willing, in fourteen years we'll be sending Brynna off to college (to become a vet, a horse trainer, a riding school instructor, an animal trainer .... You get the idea :o).
Thank you again and may God bless you all. You are all truly wonderful people!
Love - Pete, Alisha, Zach, Lexi, Brynna and Chelsey
Sunday, July 25, 2004 9:23 PM CDT
It seems like the 4th of July was just last week and here it is the end of July already. The summer is just flying by as it does every year, but this summer seems like it's going by much more quickly. Part of it I'm sure is my being off of work. The time for me to go back is looming. Part of it is the anticipation of Brynna starting Preschool for the first time and a large part of it of course is the doctor appointments coming up. Brynna is definitely enjoying her summer! We tried swim lessons earlier this month, but I made the mistake of trying to start her in level 2 because she isn't afraid to put her head under water. I think skill wise she would have been okay, but socially she wasn't ready. She's certainly come out of her shell since then though! We've been spending almost every afternoon at the pool and Brynna keeps asking if the lifeguard is watching her swim and she even asked one of the lifeguards that was playing in the water with some other kids if he would pick her up and throw her in. The days that we've spent at the pool have given her a lot of confidence and she has absolutely no fear. She jumps off of the side and swims to me, she likes to swim under water as far as she can by herself, she jumps off of the diving board with her floatie on, and she's even practicing her sommersault. She'll probably be swimming circles around the kids in level 1, which she starts on Tuesday, but I think this way it will be fun for her rather than intimidating. As for the rest of the summer, we've filled up our weekends with visiting friends and family, we've gotten some golfing in (Brynna likes to drive the golf cart), and my mom and dad camped up here at Pettibone Park this weekend, so we spent a lot of relaxing time at the campground. Pete and Brynna went fishing this afternoon and of course she caught "a really big one!" We are all looking forward to the benefit in Readlyn next weekend. Brynna is counting down the days until "her party." We're looking forward to thanking many of you in person for your prayers and support, but we also know that the day is going to be very overwhelming for all of us. In the meantime, thank you again for all of your prayers and the words of encouragement! Although I don't update the site as often as I should, we do sign on daily and read the guestbook entries. The words of encouragement boost our spirits when we are weighed down with worries.
Love and God Bless to you all!
Thursday, July 1, 2004 9:39 PM CDT
I've been wanting to write since Tuesday but believe it or not, I feel like I have less time now with my mornings free than I did when we were going to Rochester every morning. Maybe that's because we are filling up our time with fun things. Brynna has been spending a lot of time playing outside with her friends and with Zach and Lexi. She wants to be pushed on the swingset all the time and we went to the pool today too. She couldn't wait to tell Dad that she put her head under the water in the big pool "for a really long time!" We're all so excited about her doing these things, including her, because it's really the first time this summer that she's wanted to or been able to do them. The doctor was very enthusiastic on Tuesday about the progress that Brynna has made. She said it is obvious that the tumor has responded very well to the treatment and that the amount of improvement that there is is a sure sign that the drug therapy was effective. Brynna's strength truly is back to almost 100%. We found out that we won't go back for a check up for 7 weeks rather than six and that her 7 week and 8 week appointments are primarily to check for any long term effects of the drug therapy or radiation. At 12 weeks we will go back for the follow up MRI. The doctor said that if we did one sooner than that it may very well be discouraging because the cells that have been killed by the radiation could cause swelling in the brain and there will also be scar tissue and that the tumor could look larger rather than showing the actual shrinkage at that time. Hopefully at 12 weeks we will have a better picture. Another positive note was that the doctor talked about her having a good school year. What she initially said to us was just that she could plan on starting preschool in the fall and that we could think about what we wanted to buy her for Christmas. I guess we are encouraged by that small statement because we are taking every ray of hope that we can find and holding it close to our hearts. In any case, Brynna looks great and is laughing and playing like she used to and that means so much. Although there won't be any medical updates for a while, I will continue to write and share how Brynna's summer is going. She will be starting swim lessons a week from Friday and is very excited about that so she can swim like Zach and Lexi and won't have to wear her "floatie" anymore. Judging by her willingness to put her head under water, I anticipate that she will do very well. This holiday weekend we are planning on spending some time with the Duffys at their campsite. One of Brynna's new loves is campfires and s'mores (with burnt marshmallows of course!). We're looking forward to seeing the fireworks in La Crosse this year, as the last few years we've been in Prairie Du Chein over the Fourth and haven't gotten to see any big ones. We will miss seeing those of you we usually see on the river over this holiday weekend though. I hope you all have a safe and fun Fourth of July!
Love and God Bless!
Alisha
Sunday, June 27, 2004 4:42 PM CDT
For those of you who don't read the other journal entries, just our updates, I wanted to pass along this information.
The "Hope for Brynna" Benefit Committee would like to invite everyone to a Benefit for Brynna on Saturday, July 31st. We will be having a pork sandwich meal which will be served from 5:00-7:30 PM at the Center Inn in Readlyn. Fun games for the kids will be set up for the kids to enjoy while the adults socialize. We will also be selling raffle tickets which we have already started doing. If there is anyone wanting to buy some raffle tickets or would like to donate a prize for the raffle please contact Mark Boevers at 319-231-1138 or Jody Delagardelle at 319-822-7806. We are still in the planning stages but everything seems to be falling in place nicely. We are really excited about being able to help the Peters family out with their expenses and to continue offering our prayers and support. We hope to see all of you at the benefit!
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Just two more days of treatments left. By now it is all old hat for Brynna, she is even handling the Monday port access very well. She is very matter of fact about it and has all the terminology down. She doesn't refer to her port as her bump anymore, but insists we call it her port. She continually impresses us with a wisdom beyond her years. She is in very good health, the liver enzymes are going down gradually, which is what the doctors wanted to see and the strength in her right side has returned almost 100%. It's hard to believe that there is anything wrong with her. She is losing her hair, but so far she doesn't realize it and the areas are mostly covered by her other hair. She is supposed to continue losing it for a while because the radiation continues working after treatments are done, but we hope the hair loss won't become any more noticeable than it is now. For right now, as far as Rochester visits go, we have our last doctor's appointment on Tuesday afternoon and a check up MRI in six weeks. Just to explain to you all where we go from here, our greatest hope is that we never see any signs of the tumor again. Things are going as the doctors expected, the tumor has responded to the treatments, but what we don't and can't know is if the tumor is completely destroyed. Although we're glad to see the end of treatments, it is also difficult to be done because we feel like we will no longer be doing anything to actively help Brynna. What we can do is have faith and keep praying that the radiation did it's job and destroyed all of the tumor cells. The only way we will know if the tumor is growing again is if her symptoms return. If that should happen there are other treatment options, but the radiation is the most effective treatment for this type of tumor. The next year is going to be very hard for us, wondering every day if she's better or worse than the day before. It will be very difficult letting go and letting Brynna just be a normal little girl and not fretting about every little thing we see. I know God has a plan for us, but I pray that he feels he's tested our strength enough and will grant healing for Brynna. Through all of this, we've certainly learned to treasure every minute of every day, every smile, every laugh, every hug and kiss from Brynna and all of our children and to treasure all of you that have given us your prayers and support. Without you, this road would have been much harder to travel.
Love and God Bless to all!
Alisha
Monday, June 14, 2004 8:11 PM CDT
Hello to all. We had a good weekend with the wedding and all. Brynna was tired at the dance and the noise bothered her so she only danced a few dances and then she and I and Chelsey went up to our room and crashed. Sunday morning she was bright and chipper though and spent some time in the pool with Zach and Lexi and her cousin Justin. He's a "big kid" (20 something) but the kids love playing around with him. We got through another Monday! Brynna gets better all the time about having her port accessed and was very brave and strong today. She didn't put up too much of a fuss. We got some disappointing news today. Brynna had to be taken off of the test drug that was supposed to be making the radiation more effective. Her liver enzymes were significantly elevated today which caused the doctor to make the decision to take her off of the drug therapy. They weren't dangerously elevated and she said they will go back to normal quickly, but she won't be able to go back on the medication. We were putting a lot of hope in this drug so we are disappointed, but it is all in God's hands in any case and with his grace, we will have the miracle and healing we are praying for.
Love and God Bless to you all!
Friday, June 11, 2004 4:07 PM CDT
Just a quick note. We had another good week. We're all looking forward to Troy and Rachel's wedding this weekend. Brynna can't wait to dance! I've tried my hand at adding photos, so there are a few of them for you to see. Brynna is our animal lover. She's had a few recent experiences riding horses. She came by this love naturally I think. She rode ponies like a pro on our family vacation when she was two and has been crazy about horses ever since. It took us a long time to convince her that we couldn't keep a horse in our back yard. We have the fence, we have the wheel barrow and shovel to pick up piles, so what's the problem? Now all she can talk about is moving to the country. Just 12 days of treatments left and then hopefully we can look forward to a fun summer. We can see that Brynn is stronger yet this week, so that's been exciting and encouraging. Brynna can tell a difference herself too (Her thumbs up is working really well!). Once treatment is done there won't be anymore unless her symptoms return. That would be the only way we will know if the tumor has regrown, but please continue to pray for her that that won't happen and the tumor is gone for good! I'm going to sign off now so I can start getting organized and packing. I'll try to write more on Sunday. Maybe I'll have pictures from the wedding then.
Love and God Bless to all!
Sunday, June 6, 2004 9:51 PM CDT
Hello again to all. I apologize for not updating sooner. It seems that the only time I can find to get on is at the end of the weekend. My only peaceful time is at night when the kids have gone to bed, but during the week I'm too tired to stay up and get on the computer. I will try to be better. I know this is the best way to keep everyone up to date with what's going on with Brynna. I'm also hoping to have some pictures on here later this week for everyone.
We will be going into the 4th week of treatment tomorrow. We're half way through! Last week was a pretty good week over all. The anesthesiologists have figured out the right amount of medication to give her and they are also giving her something to help her wake up more slowly so she isn't as upset coming out of sedation anymore. Tuesday was a bad day with Brynna's mood, but it was in large part because we had such a busy weekend and she got to bed late on Monday night. She still gets grouchy while she is having her drug therapy, but it's because of the two hours of waiting before we can go to radiation and also because she has to fast. She just wants to get it done and get home. On Friday, we asked her to try to keep her spirits up through the whole morning and she did. Hopefully she'll remember that going into this week and will keep it up, but we really can't complain because she is handling this all so much better than we ever expected. Last Monday we met with the doctor and got the encouraging news that she feels the tumor is responding to the treatments. She felt that Brynna's right side strength is beginning to return. We think we can see it a little more day by day too. This seems to be happening sooner than we expected. We were actually told in the beginning that we might see her symptoms worsen before they got better and that never really happened. She's not really having any adverse effects from the radiation at this point either. The anti-nausea medication is doing its job and she's really not terribly tired either. We are hopeful that if she is going to lose any hair, that it won't happen until after her cousin Troy's wedding next weekend. We want that to be fun for her and don't want her to be self conscious about it. Of course we are praying that she won't lose any. She really loves her long hair and it will hit her hard if it starts to fall out. We tried to talk her into cutting it to her shoulders so it wouldn't be as dramatic for her, but she told us that she isn't cutting it until it gets to her bottom, so we're crossing our fingers and hoping for the best. It seems that the mood swings brought on by the steroids they are giving her to decrease the swelling on her brain have disappeared and she is back to her silly self. She is such a joker and makes us laugh every day. She even cracks herself up! We wish you all could experience it. She is such a joy and seems very wise beyond her years. Of course she'll tell you that she is very smart too! Hopefully things will continue to go as well as they have been for the remaining weeks.
Through all of this, we have come to see how so many people are affected by cancer and by brain tumors. We were told in the Chemotherapy Unit where Brynn gets her drug therapy that they see approximately 150 people each day. We have gotten to know and been touched by the strength of the people and families we see each day. A few of the older patients that are there for treatment have approached us with gifts for Brynna, or ask how she is doing each day. It is so moving to have them do that when they are going through this trying time themselves. We would like to ask you to include these people in your prayers. Hunter is a little boy, Brynna's age, that also has a brain tumor. His family has been an inspiration for us and have boosted our strength and faith. (Hunter's Web site is /mn/hunteryablonski) Chloe is a 3 1/2 year old little girl that will be starting treatments for a brain tumor next week. Jackie is a very brave young girl who is just finishing a round of treatments for a brain tumor. She has been having a rough time and we are praying for healing for her during her time off. Mrs. Shmitz is a grandmother that is receiving chemotherapy and radiation treatments. Brynna & Chelsey caught her eye the first day we were up there, and the second day we got there, she had a Strawberry Shortcake blanket for Brynna and a knitted hat for Chelsey waiting for us. Deloris Stephens is a woman who greets us each day in the radiation department and asks how Brynna is doing. She will finish her treatments shortly before Brynna does. We would also like you to add Lori Brunscheon to your prayers. Lori is a friend of ours from Readlyn that is going through treatments now too. There are many others that greet us each day, but we don't know their names. Pete says he thinks they are angels watching over Brynna. They make it a point to come to us, and don't even know what is wrong with her or how sick she is. We also want to send a special note to a little girl named Meghan from Pennsylvania. She found out about Brynna from her aunt and uncle and sent a nice note to Brynna wishing her well. It really meant a lot to Brynna and us. We can't tell you enough how much we appreciate the prayers, the cards & the notes that keep coming. They help us get through each day. God bless you all!
Love - Pete & Alisha
Monday, May 31, 2004 11:38 PM CDT
Just a quick note as it is late. Once again the weekend has flown by, but we had a good one. We kept busy with soccer games for Lexi. She had a tournament and games Friday, Saturday and Sunday. Saturday night, we went out to dinner and then to Riverside Amusements which has a go- cart race track and miniature golf. Brynna has a need for speed! She loves racing with Dad. Sunday night we spent the night in Winona at the Holiday Inn with Pete's sister Sandi and her family. The hotel has a great wading pool with water slides for kids, so it was the perfect place for the kids to enjoy the water without mom and dad having to get wet. Today we went to a Memorial Day get together at Ted and Sue Duffy's. Lot's of kids to play with and good adult interaction for Pete and I. So starts another week of treatments. Brynna told both Pete and I that she is looking forward to going to the hospital again tomorrow so she can go to sleep. She actually likes being sedated for the radiation treatments because she says she can hear the ocean in her ears when she goes to sleep. She is a very brave and resilient little girl and is far exceeding our hopes that she would gain acceptance for the daily trips to Rochester. Makes it a lot easier on us.
Thank you all for the notes and continued words of encouragement. As I read them, I cry. Not only because of the sadness of our situation, but also with greatfulness for all of the wonderful people in our lives. You all humble me with your thoughtfulness and support.
God Bless you all - Alisha
Tuesday, May 25, 2004 8:42 PM CDT
I think I'll start from the beginning with what is going on with Brynna for those of you we haven't talked to. On Thursday, May 6th, we made an appointment for Brynna to see her pediatrician because she was limping and it seemed to be getting more pronounced. We were thinking maybe something was wrong with her knee or her hip. While we were there, we discussed some other things that we had been noticing, what we thought was a lazy eye, and she had stopped writing with her right hand and was using her left hand. When Pete asked her why she was doing that, she replied "because I can Dad," so we didn't really think much about it. With these concerns, the doctor decided to do a neurological exam and found that she had siginificant right side weakness in her leg and hand. She went ahead and ordered xrays for her hip and leg, but also decided to try and schedule an MRI for that day. As you know, the MRI revealed the tumor on her Pons. We were sent to Mayo in Rochester that night, (Chelsey was born the next morning at 5:30 a.m.) Pete met with the Pediatric Neurosurgeon that morning and was told that because of the location and the type of tumor it was inoperable. I was released from the hospital at noon that day and Chelsey was transferred to St Mary's where Brynna was at, so I could be there for the meeting with the Pediatric Oncologist. She told us that a biopsy could not be done on the tumor because of it's location and also that it really doesn't matter whether it's malignant or benign because it is the location that is dangerous. It still seems that we don't know enough about the tumor itself, but we do know that the long term survival rate, meaning more than 2 years, is 20%. That 20% is our ray of hope and with all of your prayers, we know we can be there. Treatment for Brynna is drug therapy and radiation 5 days a week for 6 weeks. The drug therapy is a test drug which we hope will make the radiation treatments more effective. I'll add more about this tomorrow hopefully, but am going to sign off for now. There's not enough time in a day.
Today was a pretty good day for Brynn. It seemed like she had some of her spirit back. She and I went to play at Sue Duffy's because she has a friend there that she was missing. That was encouraging because, she hasn't been up to much interaction with others for a while. We think it's the result of seeing so many strangers and having them poke and prod at her over the last few weeks. She was really back to her silly self tonight before bed. She was doing goofy things (like sucking on her big toe :0) and just belly laughing at herself. While we love to have her be back to her old self, Pete says it's hard to play with her all day and have fun and laugh with her like everything is as it should be, then go to bed at night and think about the reality of the situation. That's when it hits the hardest, when the house is quiet and we're not busy with her or busy doing something else.
I'll write more tomorrow. Good night and God bless you all for your prayers and gifts and support. We can't tell you how much they strengthen us and cheer her. Keep the prayers coming!
Alisha & Pete
Sunday, May 23, 2004 7:41 PM CDT
Once again the weekend has gone by too quickly. Tomorrow morning starts another week of treatments. We have to be in Rochester by 7:00 a.m., so we leave home by 5:30. The good part about that is we should be home by noon every day. Things should start to fall into a routine this week, if any of this can be considered "routine". Most days will be drug therapy then radiation treatment, but some days will also include blood tests. Brynna has a port which they will access on Mondays and deaccess on Fridays. All tests and medications can be administered through the port, so they don't have to poke her every time. Brynna was pretty excited about not having the tube over the weekend, so I'm sure having it reaccessed tomorrow morning is going to be very difficult for her. Overall, I would say she is doing pretty well. She gets pretty depressed when we head up to Rochester and through her drug therapy. She has to be sedated for the radiation treaments and has a really hard time coming out of it, but is usually back to herself by the time we get home. I'll add more later, Chelsey is needing to be fed.
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