She is so sick with this tumor. Like I have said before her mind is completely intact but her body is shutting down. She still can stand up (but with pain) and she can communicate well as long as she has all her medicine. She has counted down the days until Halloween. My heart would cringe every time she mentioned it. Halloween is her favorite holiday (besides Christmas –of course!), and I just dreaded the fact of the holiday because she is so sick and she is in a wheelchair. This was a huge dilemma for Charley and I. She just assumed that we would go over to the Ireland’s as we have for the last 7 years. It was just expected. I did not want to do it because I was worried about her health, but I have to tell you she pulled strength from somewhere and insisted we go. With Charley’s support as well as Liz (our Hospice nurse) I reluctantly agreed. I am so glad I did! She was a night fairy! We went over and she played foosball with her dad as Joseph and the boys watch them play. To me it was a complete miracle! She has not colored, not played a game, she has not wanted to do anything, and she is essentially bed ridden. She wanted to play on the trampoline and it s so hard for her to accept being in the wheelchair. She cried a little and begged her Daddy and I to let her get on the GLIDER! We even had a moment of trying to see how we could get her on! Of course we couldn’t and she was disappointed. It’s difficult to see her want to be normal and her body not let her. I still have the hardest time knowing that 2 months and 1 week ago she was running, playing, we were taking great vacations, she was going to camp. How could this happen?~ We took her to seven houses (the ones with the smoothest driveways and a walkways to the door!) and she trick-or-treated. We stayed gone from our house 2 ½ hours! That is totally unbelievable considering her condition! You should have seen her happy face counting her candy out and having a very normal moment! I cried and Charley watched with joy in his heart. We are appreciating every good moment with her, each one that we get to have is so special! Thank you my dear Ireland’s for being the “fun” house to be on Halloween! She relates a lot of her good times playing and swimming over at the Ireland’s house, and having fun times with Joseph, Cecelia, and Shannon.
Since I am sending some accolades out, I want to say something about my Mother. She has been postponing a hip replacement surgery to be here with us. This is a much-needed surgery but yet she insists on being her for us during this traumatic time. I love her so much for her support. Thank you Mom. Charley and I really need you.
I read my last update before I wrote this one and realized I did not mention Deborah! She has been totally supportive of us and she has made long drives to bring us great food! The chicken and dumplings were great. Thank you Deborah. Also Marcie fixed the best Chili I have ever had! I actually tried to hide it in the refrigerator to keep the leftovers to myself! (LOL) Marcie also was there with her husband Kurt when our air conditioner was broken last week (or the week before), Jacqueline was so hot and Marcie helped keep her cool and she went though watching Jacque struggle. Kurt and Warren helped Charley put in the garage window air conditioner unit in the living room window to make sure Jacqueline was cooled off until Monday. These are so crazy moments, and it takes good friends to help us. Seeing Jacqueline in pain is heartbreaking. It’s hard on us, and very difficult for others to watch. I know that it’s also difficult to watch Charley and I in these moments, as our heart is broken. Thank goodness we have her stable.
Father O’Brien just returned from his Ireland trip. We are so grateful that he came over with Kathy. We had a nice talk on the porch. Jacqueline had a disturbing day and she was finally sleeping. I was upset so Father’s timing was good! We have good moments and bad ones. This is a very difficult thing to go through. Sometimes there is laughter and joy here at the Teigeler home and other moments we have are not so good.; If Jacqueline is doing well we all are doing well, but if she is not it is upsetting (of course!). I know Father O’Brien and Kathy wanted to see Jacqueline, but I feel that Charley and I needed them more at that moment (of course God knew). Thank you for your visit.
I want to apologize for unreturned calls. It’s hard to keep up with anything other than Jacque. She is our focus. I need to let you all that your support is so appreciated and when you call and leave a message we know that you are thinking of us. Thank you.
I am trying to update more often. I have Mom here and with Jacqueline’s pain being managed I can steel away more moments to keep everyone informed.
Charley’s sister Dawn came down from Ohio, with their Father (Jan) from NY. Rebbecca drove in from Illinois; my parents drove in from Wilmington and my brother (Taylor) flew in from Phoenix, AZ (just last night). My other Brother, Stephen in California, has been on stand by (thank you brother). Last weekend Michelle flew in from California for a weekend and Tracey has driven up twice from Daytona, Fl. So we gathered the troops for desperately needed support. We really appreciate it.
I wanted to make a couple of notes of thanks (and I am sure I will miss people, please forgive me if I do). Of course my stable helpers Laurel, Emily, Marcie and Melissa (AKA Missy), always here to help me with anything! Emily offered up her beach properties for my family to stay. Janet Burnett, Jacqueline’s piano teacher, her church (Islands Church) bringing wonderful food by to help feed the temporary troops. Elaine and Curt being on stand by and bringing food too, thank you!
Dr. Carl Coxhead (Islands Chiropractic) has been adjusting Jacqueline for years, she loves it! She also loves him! When she could be adjusted he made many special trips out to the house for personal visits with Jacque.
Marie Wilson (reflexologist) came out everyday on her lunch hour to give Jacque treatments. This was unbelievably helpful. Jacque’s feet have been swelling from high glucose levels and this along with the other aches and pains in her body really make Marie’s treatments feel good to her. Thanks Marie, along with all the personal support you have given to Charley and I.
- Special note to Father John (St. Peter the Apostle) for being so supportive, coming over to the house at a moments notice to see Jacqueline, and pray with us. This has given us more comfort than you can imagine. We will never forget the peace you brought to our heart. Sincerely, Thank you.
- Special Note to Brad and Angela, Thank You for making that wonderful book! We will always treasure the day of your wedding, and love you forever for letting Jacqueline be a part of it. We all had the time of our life as you and Brad started yours!
So the update is that Jacque is stable for now. We have to just watch her from here and see what she needs (give it to her) to make her as comfortable as possible. We have been waiting for her to be stable to let people visit. I know family and friends want to see her. My Dad, Dawn, my Father in-law, and my brother all leave Monday. So Mom will stay a few more days here at the house, and Becca will head home as well.
We will be accepting visitors this week sometime after Monday. We need to keep a controlled environment for her, so please call ahead. We appreciate the respect showed for our privacy during this time (everyone has been great!).
It’s been more than difficult. I try not to think about it too much. I read, as much as I can about other families that go through this nightmare, there is no other word to describe this other than a nightmare! I read an excerpt, written by Joel Osteen, on a website of a child that recently passed away who had fought a tough battle like Jacque, and I am posting it with this update. Charley and I constantly ask ourselves; why this type of brain tumor? Or, why Jacqueline? Why did we have to lose Shelby, and now this? It’s really difficult to grasp that we are facing either a miracle happening or losing our Jacque! These parents asked the same “why?” questions too. I am sure all of you that know and love Jacqueline ask ‘why?’ yourself. I try and remind myself that we are not the first to go through this tragic experience, that many people from all over, face some kind of tragedy each and every day. I thought this was important to share. Even though living this is not as easy as reading it, both Charley and I believe what Joel Osteen wrote below:
Written by Joel Osteen. It really seems to sum it up: Trust God’s Timing: Human nature tends to want everything right now. When we pray for our dreams to come to pass, we want them to be fulfilled immediately. But we have to understand, God has an appointed time to answer our prayers and to bring our dreams to pass. And the truth is, no matter how badly we want it sooner, it’s not going to change his appointed time. When we misunderstand God’s timing, we live upset and frustrated, wondering when God is going to do something. But when you understand God‘s timing, you won’t live all stressed out. You can relax knowing that God is in control and at the “appointed time”, he is going to make it happen. It may be next week, next year, or ten years from now. But whenever it is, you can rest assured it will be in God’s timing.Charley and I thank you all for supporting us, loving Jacque and being there when we need you. We will update when we can. We still believe in miracles, as well as understanding that there is “God’s Timing” and we must have faith in both.God is not like an ATM machine, where you punch in the right codes and receive what you requested. Prayers are not always answered in 24 hours. No, we all have to wait and learn to trust God. The key is, are we going to wait with a good attitude and expectancy, knowing God is at work whether we can see anything happening or not? We need to know that behind the scenes, God is putting all the pieces together. And one day, at the appointed time, you will see the culmination of everything that God has been doing. God often works the most when we see it and feel it the least...
Love from Julie, (Charley and the rest of our family too!)
Since the rough day at the hospital that last Wednesday, things still aren’t exactly stable. We are just in the “wait and see”, and the “it gets worse before it gets better” phase of treatment. Jacque has had difficulties, but we are handling problems as they arise. I am more comfortable with “emergencies” that come intermittently, because we are informing and educating ourselves as much as possible. It’s still tough to see her in pain, or struggling with normal everyday things! Charley and I are doing whatever it takes, and trying not to think of anything other than this is a temporary situation. We are going after this like warriors! Don’t get me wrong we break, but we get strong fast and remember to have faith.
There are many negative things, but I want to tell you the most positive thing that happened yesterday. Our neighbor Rhonda brought over a gumball machine for Jacque. Jacque has been over to their house playing with Rhonda’s daughter Casey and she has always loved this gumball machine. She has asked us for one several times. Of course there was not one gumball in it….no sugar for Jacque right now, but we put pistachios in there. It’s an old fashion one and you have to put pennies in for it to work. Let me tell you guy’s….She lit up and had the best smile she can have right now! You could feel how happy she was, and she was so surprised! Gosh, these happy moments mean so much to us! It was just wonderful.
Our friend Marcie wore a “Cat in the Hat” –Hat over yesterday and helped put a puzzle together with Jacque. Marcie felt the puzzle was addicting and really got that puzzle almost done. Jacque finished it off this morning. Our friends brought over some challenging puzzles this past weekend, and I even find them fun! It’s hard for either Charley or I to sit for any more than a few mins at a time, but we both have worked on them.
We really need to keep Jacques mind off of being so sick, but it’s hard because she tires easily and really can’t have too many people talking all at once in the house. She gets bored of Mommy too! I am so grateful for all of you that have come by and played games, put together puzzles, watched some TV with her, and came baring gifts to cheer her. It’s her body failing her right now, not her mind! Her mind is sharp as a tack!
Keep these prayers and positive thoughts coming that this medicine is going to work for her. We still have a few weeks to wait to see how the medicine is working on the tumor. This “wait and see” and “it gets worse before it gets better” stuff is for the birds!
Thank you all.
Julie
Today (Wednesday 10th) we had our first PET scan. Jacqueline’s glucose levels were so high 2 days ago that the doctor told us she may go into a diabetic coma! We were so upset because she is on such a strict diet. The DR’s in Houston told me that the levels are high because we had to raise her steroid intake. We did that last Friday because Jacque’s headaches were bad and the Tylenol 3 wasn't cutting it for the pain.
Tuesday I was upset because of her glucose levels and the thought of giving her insulin shots everyday. They also called me to go over the instructions for the PET scan and it was tough for me to hear that; 1) She cannot be on her meds for 4 hours, and we don't want to miss a dose 2)She could not eat/drink for 4 hours before we go in one hour ahead of time, then wait one hour for actual appointment, then 45 min. for the dye, then approx. an hour for the actual PET. That meant she would go without food/drink for 6 hours. We just don't want her to go through these things but we have too.
Today we did blood work and her glucose levels came back too high for the PET. The Dr’s said we had to give her insulin for the PET because the scan was so important. The headaches she was having may be telling us that the tumor is active. I got the insulin and she got a shot before we left. Then we get there after all the hectic-ness of the insulin and they tell us we now have to wait 4 more hours for the PET because of the shot! We were beside ourselves, but we made it. She is our hero! She was unbelievable! She didn't cry, whimper or anything! She's a champ! All the waiting, the no food/drink. She is so great! She was telling us in the car "I love you both, you are the best parents in the world, thank you for taking care of me".
Daddy dropped us off at the house after the "horror day" and went out to get his baby some lobster that he promised her. She really does deserve it! He brought back a live lobster and we got a laugh out of the lobster attacking daddy. Having the laughter was welcome because of the stress!
I know I am going backwards in my time line here since our trip back home too Savannah but I am doing my best to fill you all in. All of you have been so wonderful. We heard the Jac Kick-a-thon at Byrd’s went great, THANK YOU ALL! What a great community spirit you all have and we are so grateful! I can't imagine the work involved in it. Thank you, Thank you, Thank you!
Emily, Laural and Melissa have all taken turns helping me at the house since Charley went back to work. Thank God for them, I cannot do it on my own and for those of you who know me well, know it has to be really bad for me to ask for help!
Janet, Jacque's piano teacher came over and Jacque actually had a great piano lesson with her! She is so kind to come and do that for us. We think it is great to try and get Jacque to do as many normal things as she can do. The lesson was only 15 minutes but wonderful for her and she enjoyed it.
We have nurses come in for vitals and blood work 3 days a week. We have Secure Care CNA's coming in every night so we can sleep. We cannot keep our strength up without it. We have Tiffany during the weekdays and Cocoa for weekends. Jacqueline wants Mommy and Daddy all the time so it has been hard. We get 5 hours of sleep now, and that is so helpful!
We are trying to get on a schedule but it's difficult. Sunday night we spent in Memorial hospital because Jacque had a problem. We were able to call Genevieve, our friend who lives close by who is a nurse to assess the situation for. She was great and we are grateful she could just run over.
I better get some sleep. Please know how appreciated all the wonderful gifts are, the prayers, the help. I just can't believe how kind and generous everyone has been. There are so many behind the scenes people I want to thank. Thank God for all of you!
We will try and get better on our updates. I am sure Charley will write one soon too.
Much thanks, keep those prayers going, she is so precious!
Julie
Hello All! It is amazing how many things can change in a short amount of time. Last Tuesday night Charley got in a serious car accident. He has been in the hospital twice, but he is fine. He has cuts and bruises, aches and pains, nausea and lightheadedness. He needs bed rest but it’s hard for him to rest during this period of crisis. He is somewhat better today and he will attend our “nursing” classes and nutrition courses tomorrow (Monday). The sooner we learn how to take care of Jacqueline the soon we can get home to Savannah! Jacque really wants to be at home, she says it at least twice daily.
The night of the accident I called Denslay Hoffman to let him know about the accident, I was telling him the story as I was still in shock that Charley was in the hospital and it’s all so horrible that Denslay instinctively chuckled. I am so grateful he did that because I let out a big sigh, finally breathed, and then chuckled too! It really doesn’t even sound believable that all this is happening.
Two young girls (19 years old) changed lanes on the freeway and hit Charley. The we going 55-65 miles an hour while Charley was at a complete stop in the far right lane in rush hour traffic. He had just spent hours looking at every label in the health food stores and purchased a ton of groceries. He had found a pizza that Jacqueline could eat (healthy pizza!) and he had gone to the eyeglass store to fix her glasses that had broken earlier in the day when she fell at the clinic. Most of the groceries were in the trunk. When he got hit it was so hard that the entire trunk was in the backseat. Glass flew everywhere! The airbag knocked him out right away. Good Samaritans stopped and came to help him (thank God!). With all of this Charley actually came home from the hospital with half a bag of groceries that included THE PIZZA, and Jacqueline’s eyeglasses (they were in perfect condition!). Somebody is looking after us! Please keep us in your prayers its working.
It’s hard to see Jacqueline be so tired and not want to go anywhere. She won’t even go outside! Any movement bothers her.
We go to the clinic daily and they told me that for what Jacqueline is going through she is doing unbelievably great! She is a strong little girl. I felt better when they told me that today, but it’s hard for us to see her struggle.
We called Jacque's pediatrician (I don’t know if I need to keep his name anoamous or not, I will hold off for now.) He will take care of her and help us through this clinical trial! Yeah!!!! We were afraid we might have a hard time getting a physician to agree to have her as a patient and see her once or twice a month. The responsibility is extremely difficult. The clinical trial would not let us go home unless we had a physician. It really took a load off our shoulders when he agreed to do this. This is just one less thing we have to worry about. Jac’s pediatrician has a great personality, and he has been very helpful as well as kind to us. We really appreciate him.
My Mother and stepfather flew in Friday and Charley’s sister Dawn flew out Saturday. It’s an impossiable job to try and take care of Jacque with just the two of us. I thank God for Dawn coming and being such a great help to us. I miss her already and it’s not even 24 hours that she left!
With Mom and Norman here they can play games or color with her. They can play games with her and keep her mind busy. It also allows Charley and I time to break, go cry, talk outside about things we cannot talk about in front of her. We have to have help.
Other parents of Brain Stem Glioma children have been in contact with us. They gather on the internet for help. It is nice to talk with them as we are traveling the same road right now. What Jacque has is rare. There are 100-200 children diagnoised with brain stem glioma per year. We have to remember that every one of these tumors are different for each patient. Jacques diagnois is Diffused Pontine Brainstem Glioma-High Grade. I could only find 4 parents in the USA with children that have the same diagnosis as Jacque that are living right now and fighting this disease. 20 Children are on the Brain Tumor List.
When I look at Jacque I know she is fighting a hard battle and we must believe that she will win. Dr. Burzynski and Dr. Weaver have been so attentive to Jac. I feel like if she wins this fight then they also win. It’s in the institution's best interest for this to work! This helps me be more positive.
I am actually cooking Sunday dinner in our little hotel room tonight. When we sit down to eat together, we will say a prayer of greatfulness for the love and support we have received and for each moment we have with Jacqueline. She sure is a special child.
Julie
Hey all. Night shift here in Texas. Julie needs a complete night of sleep for a change so I’m doing an all nighter mainly
because I’m caught up on my sleep for a change due to the accident I had a few days ago. More on that later.
Jacque is steady, going for her treatments everyday. Deals with most everything like a champ except when we have to change the needle out in her chest port. Her blood clotted in the port’s needle Thursday so we have to give her some blood thinners now and a little Heparin every morning to keep things flowing. Her dosages on Antineoplaston are going up a little everyday until we find the correct dosage for her. Everybody’s different. The dosage of her steroids is going down now slightly too which is reducing her appetite. Now she’s only hungry 23/7. Her blood sugar is improving too and is in the one hundreds now. Almost there on that. The daddy diet is working. Hey, somebody has to be the bad guy sometimes. She really misses her favorites. Anyway, hopefully we’ll be able to come home by next weekend at the earliest. Jacque really wants us to be at home and I can’t blame her. This hotel living is for the birds.
As for my latest saga, and most of you have already heard this, but I got plowed into by a couple of teenage girls that rammed into the rear end of Julie’s Aunt Chris's car. I had stopped for traffic on the Interstate and they didn’t. Cars a goner, trunk is in the back seat. Thank god the girls weren’t with me at the time. The girls must have been going 60-70 miles an hour and the witnesses said they saw no indication of brake lights on their truck. I must have taken the full impact. I was pushed into another car which caused the airbag to deploy. Knocked the wind right out of me. I always wondered what that felt like and now I know (I’ve got to stop wondering about stuff). I walked away though. Went to the hospital by ambulance to have my neck X-rayed just in case. Went back two nights ago to have a CAT scan because I was dizzy and nauseous but they said it was just probably a mild concussion and that I needed to get more bed rest. Trying to take it easy and rest but Julie needs help at the clinic so I've got to get back on it Monday. Fran and Norman, Julies parents came in yesterday and Dawn my sister left today. Thank God for family and friends.
Its 3AM snack time so I’m signing off for now. Real quick here’s a great picture taken just a few weeks ago when Jacque was a flower girl in a friends wedding. More later.
We are having to put Jacque on a low sodium diet, so she not only has to deal with being away from home, having “head cramps” (headaches), nausea, and an IV tube running from her body, but she is also attached to a machine that is so heavy that Daddy or Mommy has to pick it up to walk with her everywhere. Now she can’t have anything she likes to eat! It’s total misery for her. She wakes up crying for pizza, pancakes, waffles, brownies, and the list goes on. Any word uttered on the TV, or food sign on the freeway reminds her of what she can’t have. The steroids make her crave food 24/7, and her treatment makes her feel as if she cannot get enough to drink. Sunday, she begged me in tears, to go to the vending room, for just “three sips of coca-cola, or just one itty-bitty brownie.” She is such an intelligent child that we’re able to tell her that her blood sugar levels are not good at 330, and that this is what we have to do to get it down to under 100.
On top of everything else, the medicine has given her thrush, a yeast infection in her mouth. So her mouth hurts and burns and nothing tastes right. The oral medicine for the Thrush tastes bad! I swished the medicine myself before I gave it to her. It’s grotesque! Out of all the big problems it’s the little ones that seem to put us in panic mode. It tears us up to deny our child anything at this point. Especially something as simple as a brownie or Mac & cheese.
Charley has asked me several times, to write an update. Naturally, I am having a difficult time with this, and it’s hard for me to be away from her even for ½ an hour so I can write. Both Charley and I are trying to be completely strong and do what we have to for Jacque, but both of us break down and fall apart in disbelief that this is really happening. Most of the time I don’t really feel like I’m in my own body. I am only going through motions. I become alright when she is stable. Stable is seeing a glimmer of a smile in her eyes, watching her eat something healthy, that she likes, and playing games with her. She has always loved to make people laugh. I have teased Charley that she’s going to become a stand-up comic one day. She is still trying to make us laugh in strange moments, so that’s my hope.
We just returned from our day at the clinic. Her blood sugar levels are down from 330 to 260 in two days. We have cut down her steroid medication, and we are really working this diet! Jacque’s legs keep failing her and she fell in the lobby of the clinic today. She is alright but they want her to have a wheelchair for safety. Seeing Jacqueline in a wheelchair devastates her Dad, but the risk of head injury or falling on her stomach port could be fatal. So for now this is what we must do.
I would like to close this update by letting you know that we appreciate all of you. It’s hard to fathom so many people gathering together for Jacque, and for us. I just asked Jacqueline what I should say and she says, “Thank you!” We can’t really express on paper or in words how much all the positive thoughts, prayers and support really mean to us. I will try to be better with my updates.
We survived the hurricane/tropical storm that welcomed us to Houston. They actually use their roads here in Houston as storm drainage so the town shuts down when it rains. We had to strategically position ourselves the night before the storm to be sure we could get to the clinic the next day/second day of her treatment.
Yes we have started treatment. We have chosen Burzynski’s Clinic in Houston to try and fight this horrible tumor. He uses an Antineoplaston treatment that has shown more promise than anything we could find out there. Although I’m not going into the complete statistical details here, basically its results give us a possible survival rate of 40%. That would be a 40% chance of living up to 5 years. Much better than the chemo/radiation rates of 7% to survive up to 2 years and the initial 3 months without treatment that we were 1st told about. This type of tumor is extremely hard to fight. The medical profession only measures survival rates up to 5 years, after that they feel you’ve been cured. I am working with insurance to see if we’ll have partial or full coverage but don’t know if it will cover this treatment or not since the treatment is considered experimental? Even though Burzynski does FDA studies under their guidelines, the only major insurance company we’ve heard of even starting to pay costs on his treatment is Blue Cross/Blue Shield. Good for them!
Since treatment started she hasn't experienced any bad reactions so it’s looking good that the medications will not cause her any problems. The only real side effects have been from the steroids she’s being given which are causing her to eat and complain about being hungry 24 hours a day. And since the medications are dissolved in a sodium based solution we are now on a strict low sodium diet. As mentioned we’ve had to lower her sugar intake too because of elevated blood sugar levels also caused by the steroids. This will give her liver a better chance of processing the effects of treatment. We expect to be here for the next couple of weeks and then return every 8 weeks for a one day checkup. During her daily IV treatment, Julie and I are learning to do all the treatments at home which include setup of the IV medications, blood drawing and IV pump programming with daily dosing and volume instructions.
In addition, we are taking nutrition classes which we feel will give her an even better chance of survival. Some people treat their cancers/tumors through diet only and survive. We'll see. If you have looked at Jac's website (www.jacquelineteigeler.com) you will notice that this is our 1st progress report. We plan to get these out more often. It’s been very difficult to even get sleep and food during this whole thing, so we haven’t been able to get info out as often as we would have liked. We should do much better now that we have a routine started. We think we need the routine more than Jac. Go figure!
Please keep us in your prayers and thank you for all your heartfelt support. We can’t even begin to mention the help we’ve gotten from all our family, friends, Gulfstream, the Savannah Board of Realtors, Byrd’s Korean Martial Arts, May Howard Elementary School, Mortgage Services, Homestead Reality, Mercer University, the Knights of Columbus and the wonderful people at Memorial Health. What an incredible extended family we have. There are many more out there from what we understand but we don’t even know who they all are yet because we haven’t had time to get the details. We will!
Mom’s thoughts will be coming soon.
Jac looks pretty good and her spirits were up. Charley and Julie are hanging in there and are very anxious to get to Houston. Thanks for all the support and all the well whishes we have received and we ask that you keep Jac in your prayers.