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Beach Grove LivingHannah's battle against Cancer
October 31 Hannah Dale Hatlen 06/05/01-10/31/06Hannah passed away this afternoon surrounded by her family... we will miss her smilling face. She was such a fighter right until the end...
March 22/07 - Hi there, I wanted to again let people know that we aren't updating the blogs here anymore. We have a site called Hannahs Heroes at www.hannahsheroes.ca and www.hannahsheroes.com. We do update pictures here from time to time but otherwise check those sites for updates. If this is yoour first visit, thanks for looking in and spending a few minutes. If you've been here many times before, thanks for your continued support. Thank you everyone for checking on Hannah.
Nov 28, 06.
I see that there are some people that do check in here from time to time. We're no longer regularily updating this site but have a new site that we are writing to, www.hannahsheroes.ca. Hannah has been gone from our lives for 4 weeks now and we miss her very much. We had a big dump of snow over the weekend with more to come and we firmly believe that this was Hannah's doing. She always wished everyone could play in the snow and now they can. Come visit us a the new site.
Nov 11, 06
We would like to thank everyone that came to help us celebrate Hannah's life. The turn out was tremendous and we were surprised by how many people came. We were so happy to see all the people that had been touched by Hannah. Kathie and I would like to thank Cheryl, Lisa, Mike, Jeremy, Emily, Denise, and Amanda for putting everything together.
We also like to let people know about our new site, www.hannahsheroes.ca. This new site is for our on-going journey. This site has been dedicated to Hannah and is about her life and struggle. We will be starting a new journey and this new site will be for that.
Nov 9, 06
For those attending the Celebration, parking is complementary in the hotels parking garage. Please stop by the front desk and let them know your license number.
Nov 8, 06
We would like to ask anyone that is attending Hannah's Celebration to please try wear something pink. Pink is Hannah's favorite color.
Nov 7, 06
Hannah was in the Vancouver Sun and Province on Monday in the Remembering section. We would also like to thank Marcus Naslund of the Vancouver Canucks for donating his prize for the Canuck Player of the Month to BC Children's Hospital in Hannah's name. There was also a follow-up story in the South Delta Leader about Hannah's passing.
Nov 5, 06
A good friend of ours has offered to put together a memory book for family and friends to write a special memory of Hannah in at the Celebration. If you are unable to attend the Celebration and would like have a special memory included, please send an email to barclayphd@hotmail.com and include "Hannah" in the subject line.
Nov 3, 06
A Celebration of Hannah's Life will be held on Nov 10, 2006 at the Hilton Hotel, 5911 Minoru Blvd, Richmond. Click here for Directions. The Celebration will begin at 2:00pm and go until 5:00pm. More details to follow.
Nov 1, 06
It has been a little over a day now since Hannah left us to join her Papa and Uncle Dale. I don't really know what to say or how to say it. Hannah had been declining more rapidly then we realized over the last week. Her breathing had been getting a little harder over the last couple of days. We noticed that she was breathing a little more rapidly but not anything that we thought was a concern. On Monday night Hannah started to be sick to her stomach and threw up a few times. Her breathing became more difficult for her and we decided that we needed to take her to the hospital. She was having such a hard time that we called 911. The paramedics were here in under 10 minutes and the ambulance less then 10 minutes later.
They did their best to stabilize her then loaded her into the ambulance and headed off to Children's. Kathie rode with Hannah and I followed in the Van. At the time we didn't think that we wouldn't be bringing Hannah home again. At Children's they assessed her and tried to ease her breathing. None of the medications they tried seemed to help much. Given her history they knew that there was something happening with her tumor that was affecting her breathing. We were given a choice, let her continue to breathe on her own and see if it will improve or put her on breathing support.
We choose to put her on breathing support so there would be time to see if other medication could be used to help her. We knew that the breathing support might be something that could take a long time for her to be taken off. But it was to hard to see her struggle to breath. That decision was surprisingly easy. That procedure went smoothly and then Hannah was moved to ICU. By this time it was about 3:00 in the morning. They needed to do an CT scan and we had to wait until a Tech could be brought in. That finally happened just around 6:30.
They CT scan report broke our hearts. The tumor had progressed considerably and was now exerting pressure on the inside of her brainstem. This was why her breathing was so difficult. They could keep Hannah on breathing support but the tumor may soon affect her heartbeat, blood pressure or other vital systems. We were told that they could keep her breathing with support but not for a long time.
Our difficult choice was to keep Hannah on support and hope that her condition improved or take her off support and let her go. Surprisingly, this was not difficult either. We knew that we couldn't do that to Hannah. It wasn't fair to keep her here. We had the support of everyone in the family. Our close family had joined us at Children's as we took turns being with Hannah, talking to her and telling her we loved her and would miss her terribly.
Just a litle before noon, with family all around us, we held Hannah while she was taken off life support. She seemed to be aware of us all there, and even responded to our voices. We told her that we loved her and that she didn't need to fight anymore. She should go find Papa and Uncle Dale. We would miss her but she would always be with us.
At 12:20 she took her last breath and our Angel flew to Heaven.
It has been a difficult time since then. Nothing is quite the same and it never will be. We understand now when a friend of ours who also lost his son to this tumor said that they weren't afraid of death. We'll have Hannah to look forward to.
The support of our family and friends and community has been overwhelming. I can't begin to think what this would be like without all of that support. We want to thank everyone for all the help and love we have been given.
We love you Hannah and will miss you.
Lots of Love
Tore, Kathie, Allie and Hannah
October 29 The Whistling BoogieHi Everyone,
OK, So you probably curious about the title of this entry, here is the story. This afternoon, there was a little whistle each time Hannah took a breath. We initially thought it was a little congestion in her throat and encouraged her to clear it. Sometimes she's able to other times we help her with the suction machine we've rented. Anyway, that didn't seem to clear the noise. She managed to do a little nose blow with some help and that did stop the whistle. That's when Kathie dubbed it the "Whistling Boogie" Hannah thought this was hilarious, and we laughed about it for a while.
Hannah's day wasn't to bad. She's much the same as yesterday. When we spoke with Houston this morning, they said we can boost up her medication dose to what it was when we stopped just over a week ago. The dose is now 200 on bag 1 and 20 on bag 2. This of course won't help with Hannah's energy level. But it will help fight the tumor and that's what we need to do. We have also upped her steroid dose up again. What we're hoping with this is that it will reduce the symptoms which will tell us that the symptoms are caused by swelling which in turn is likely the breakdown of the tumor. We're also hoping that the Mangosteen and other natural anti-inflammatories will help with the swelling. Mangosteen is supposed to be at least as effective as dexamethasone so that's what we're banking on.
It was a busy afternoon around here. Cheryl, Dorothy and Jane helped us with a little cleanup in the laundry room and around the house and Jane made dinner for us. We were treated to some very much appreciated massages from Helen as well.
Hannah was ready for bed by about 6:30 and asleep by 7:00. Dorothy has taken Allie home with her the last couple of nights. This has allowed us to focus more on Hannah during the night and not worry about Allie waking up Hannah or us waking up Allie when we're changing Hannah or getting her something to drink or eat. We do miss her but this is just temporary until Hannah is better.
Well, I'm going to sign off for tonight. We're not going to go to Campbell River as planned on Monday. We'll wait a little while until Hannah is feeling better. We've got a few weeks until we have to have another checkup so there is no real rush. We're still debating whether to make it a long day trip or stay a night on the island.
Lots of Love,
Tore, Kathie, Hannah and Allie,
October 28 Weekend UpdateHey Everyone,
It's been quiet weekend around here so far. Due to the Dr getting the 1572 form back to Houston we received our delivery of ANP on Friday morning. We actually got a whole months worth of the meds delivered, we though we might get a few days worth but it all arrived by Fed-Ex just around 11:00. We located the pump, opened up some boxes and got Hannah hooked up as soon as we got everything organized. It's nice to get her back on the treatment. We need to get back fighting this tumor.
Hannah has been doing OK the last couple of days. She doesn't have a lot of energy so she doesn't do much. We try to keep her interested and active by doing crafts and other things then just watching tv. It's hard to communicate at times because Hannah isn't able to talk well. She's not able to move her mouth well to form the words. It's frustrating for us because we can't figure out what she wants to tell us much of the time. And I'm sure it's more then frustrating for her not being able to let us know what she wants.
The Nose Hose has been a great thing becuase Hannah hasn't been able to eat or drink well. that means we can get her all the nutrition she needs through the hose. Although Kathie may have overdone it on the juicing today. There seems to be a fine line between to much juice and just enough. Hannah was a little more then regular this afternoon. We have also been getting back on track with the supplements today as well.
My Mom and Dad come by for lunch today. Cheryl and Lisa also stopped by for a visit and ended up staying for dinner. They helped us hang up some Halloween decorations so we're looking festive. It's nice to have visitors come by and we enjoy the company and support.
Another short update today. We're all feeling a little tired. With Hannah back on the ANP treatment, she's up a couple of times a night needing either to be changed or wanting something to drink or eat. I'm going to head off to bed and join Kathie and Hannah already snoring away.
Lots of Love,
Hannah, Tore, Kathie and Allie
October 26 Doctors on Board!Hey Everyone,
We have good news to report! The Dr we have been hoping would sign on, has signed the forms and faxed it back to Houston. And not just one of them but both Drs. have signed for Hannah. We are very relieved and happy to have this roadblock cleared away. We contacted Houston as soon as we had word that Dr. Kennedy had sent back the form. They were going to try to get the ANP medication sent out this afternoon so we will have it Friday. If not, we'll get it Saturday. We may head up to Campbell River on Friday if Hannah is feeling well. She didn't have a really good day today. She was tired and a little congested. She didn't sleep all that well either. She did fall asleep at about 7:30, as did I (Tore), and we both slept until about 2:00am. From then on it was sleep for an hour or two at at time, and then be awake for an hour. Not the best way to sleep.
The not so good thing that happened yesterday was that I passed out on the bus on the way home. It seems to have been a combination of a years worth of stress, and poor eating and lack of sleep over the last few days that caused it. I got light-headed, couldn't focus and when I tried to take a minute and gather myself by closing my eyes and putting my head down a little and next thing I knew it was a few minutes later. I think other people on the bus thought I was sleeping. I called Kathie to pick me up at the bus terminal in Ladner because I didn't think it would be safe for me to drive myself. She took me to the Dr and I got a good checkup, heart fine, blood pressure fine.
So that's a reality check for me. I need to be more careful to sleep more, eat and drink better. Reducing stress is not going to be so easy. My problem was not having a decent breakfast and not drinking enough fluids during the day; and of course, a disjointed sleep pattern. This was my bodies of letting me know that I need to take care of myself as well.
We did meet with Dr. Hukin today and had a blood test. They also tried a tap of the resevoir but only got a half CC of fluid. Not much at all. The blood work came back pretty good and Hannah's potassium was in range and sodium was good also. If we get the ANP tomorrow, we'll have no problem starting her on it.
Lots of Love
Tore, Kathie, Hannah and Allie.
October 24 Time to get back on treatment...Hey Everyone,
No, the title doesn't mean that we are restarting treatment, just that we want to get back on the ANP treatment as soon as we can. I spoke with the Dr in Campbell River and he and his colleague are willing to sign but are just waiting to check with a medical agency if they can sign. If they can get the approval tomorrow morning and get the documents back to Houston in time to get a few days worth of the treatment shipped overnight, that means we can get started again on Thursday. That's the ideal situation. Let's hope it happens that way.
Today Hannah's appetite was very good. She ate for most the days it seems. She did seem to be tired today but she did wake up a couple of times last night and was awake this morning when I left for work. Kathie and Hannah did some crafts and she had fun doing that. They also watched some Daffy Duck and Hannah had some good laughs at that. She prefers Donald Duck so I'm going to see what I can find at the local video store.
Tonight Aunties Cheryl and Lisa came over with homemade baked beans! This is one of Hannah's new favorite meals. They also stayed a while and did a puppet show with Hannah's multitude of stuffed animals. More belly laughs. Belly laughs are good becuase they'll help build up her strength and breathing again.
We had a Mangosteen sample dropped off tonight for us to try out. Both Kathie and I have take a drink and we'll try Hannah tomorrow. We wanted to make sure she doesn't a reaction to it. We'll start her out slow with a tablespoon two or three times a day. We're hoping to see some energy improvement at the least and some of the other benefits would be good too!
That about covers the day. It's time for Kathie and I to get a little quiet relaxing time. And also an early night to bed for us.
Lots of Love,
Tore and Kathie and Hannah and Allie
Monday, Monday...As far as Mondays go this one was pretty good. Hannah had a pretty good night sleep. She did wake up once but fell back asleep pretty quickly. But then she was awake around 7:30 and that was it. We spent the morning making calls and try to get the Dr. sorted out. We're still going on the assumption that the Dr we have been talking to will sign on or his friend and colleague will. They are both interested in helping and will do what they can provided there is nothing to prevent them like there was with the other Drs.
We also made an appointment at the Hospital Clinic to have Hannah's resevoir tapped. They managed to get about 3mls of fluid out and the Dr said that she thought that more was probably in there and we can try in a couple of days. We're meeting with Dr. Hukin on Thursday afternoon for routine bloodwork and a checkup. She hasn't seen Hannah in over a month and it will be good to have her check Hannah out. We also decided to have an NG tube put in for Hannah. Thats the good old Nose Hose. While Hannah has been eating well, she's not been drinking as much as she should be and also not eating as many good things as she should be. We would like to see her get more veggies and fruit and more water and she's just more interested in lasagna, mashed potatoes and bananas. While all good things, she is missing out on lots of vitamins and minerals in other fruit and veg. So we'll pull down the juicer and go to work with getting her all those good things. The good thing about the nose hose is that she can have all those things that are good for her, and avoid having to taste them. This also applies to some medications as well. This will be a good way to supplement her as needed and make sure she's getting all the nutrients she needs. I'm going back to work on Tuesday for the first time in almost 4 weeks. I'm sure there are a few things I'll need to pick up on and some things to catch up on. It's going to be hard to get back to the routine but it might be good also. I'll miss being home with Kathie and the girls.
I also have some sad news to report, Leo Dubinsky, a 3 year old boy with a brain tumor passed away early this morning. Kathie and I have been in contact with his father Yury and exchanged emails many times over the last few months. We consider Yury, Leo's father, a friend and want to let him and his family and friends know that we are thinking of them and are very sorry to hear of Leo's sudden passing.
During our last few days in Houston we met another family, The Hrischuks, who's daughter Kate is fighting a brain tumor. They to have tried many/most of the traditional therapies and have now started at the Bursynski Clinic in an effort to cure her cancer. We wish Kate, Erik, Brian and Collen all the best.
We have had many people ask for more information about the treatment at the Burzynski Clinic. There are some good video clips that explain the treatment in the words of Dr. B himself as well as some stories on patients that have been treated there. This link, Media Clips, has 16 short video clips. A survivors group has also put together a site that tells their stores, click here to read those.
Tonight we got a call from a friend of a friend, regarding a fruit called a Mangosteen. We were told that this fruit has some incredible properties that may benefit Hannah. Being a little skeptical we've started doing a little research but would appreciate hearing from anyone with any information.
On that note, I am going to end tonights update. Have a good night.
Lots of Love
Tore, Allie, Hannah and Kathie.
October 22 Nice to be HomeAh, it's nice to be home
It was quite late when we got to bed last night and I think that Hannah was still on Houston time. She woke up quite early and was hungry. She had finished off a bowl of lasagna just a couple hours earlier but was hungry again. This is the steroids doing what they do. After a little more lasagna, we got her back to sleep. And wouldn't you know, a few hours later she woke up and wanted... wait for it....Lasagna! She is on a real pasta kick lately and that's OK. Pasta is good food.
Today was a day of getting used to being back home. My parents, May and Olaf came by, as did Petter and Kim. It was nice to see them again after 4 weeks away. We did a little unpacking, and I mean a little. Virtually none actually. Dorothy stopped by as well with a couple copies of the local paper that ran Hannah's story.
By mid-afternoon, Hannah and I were tired and I was tired as well. So I tried to get her to have a nap with me. We put on a movie with the hope she would fall asleep. I did fall asleep but I'm not sure about Hannah. I think she dozed for a short while. When we or at least I, woke up, there was a nice smell of Roast through the whole house. Dorothy had brough over a roast and we were expecting Cheryl, and Jane, John, Emily and Zachary for dinner. It was a nice meal and Hannah enjoyed the mashed potatoes.
However, by the time it was 8:00, Hannah was wiped out and wanted to go to bed. Within about 10 minutes of getting her PJs on and getting a little massage by Grandma, she was asleep. A nice quiet evening followed for Kathie and I.
Tomorrow we are going to go to the Hospital and have Hannah's resevoir tapped. That should help with some of the symptoms. We also have to try and get the Dr. Thing sorted out. As mentioned we have a solid lead and just need to get it followed up and completed. If that ends up falling through, we do have some leg work to do. We've asked the Clinic to provide some names for us or have them contact some potential doctors in the area and ask if they can help us out.
Well, for the first time in a while, the update is finished reasonably early. So on that note, Have a good night!
Lots of love,
Tore, Kathie, Hannah and Allie.
Home, Home on the Range...Hey Everyone,
We've arrived safely home. The Travel went smoothly, the girls slept for most of the flight. We may have a solid lead on a Dr. but won't know for sure until Monday.
This really is going to be a short update. It's 2:00 in the morning and time for bed for all of us. I'm hoping we all sleep late.
Lots of Love,
Tore, Kathie, Hannah and Allie. October 20 Heading home on SaturdayHi there,
We had our last day the the Clinic today and met again with Dr. Burzynski before leaving. The last day for us was mostly just doing paperwork and trying to arrange for a Dr so we can continue treatment when we get home. We are disappointed that we can't continue treatment until we get a Dr to sign on, but feel that we've been here long enough and it's time to get home again. We have contacted a couple of Drs and are waiting for them to get back to us after they've had a chance to look over the documents see what the treatment is all about. We had a quick meeting with Dr. B before leaving and he was eager to get us back on the treatment and encouraged us to try to get a Dr. as soon as we can. He was again positive about the treatment and was confident that this would be successfull for Hannah. So we are going to do our best to get a Dr for Hannah when we get home.
Hannah was doing really well today. It could be due to being off the treatment, an increase in the steroid dosage or tumor breakdown. Most likely it's a combination. There was some increased fluid evident in the scan and this would increase symptoms. We may have to look at getting a shunt for Hannah soon but for now, we'll tap her resevoir and use a higher dose of the Decadron.
A couple of interesting things today to let you all know about. Our local newpaper, the South Delta Leader, has written a story about Hannah and what she has been going through this last year. The story can be found here: http://www.southdeltaleader.com/, click on "Helping Hannah". The newpaper found out about Hannah through a fundraiser that a very good friend of ours, Debbie Schuler, has organized. Soon after we left for Houston, Debbie put together a fund raiser she called, "Working for Hannah", in which supporters donate a portion of a days wage to a fund for Hannahs treatment. We were amazed when Debbie let us know that she was organizing this and we really appreciate her putting this together. Thanks Deb!
I think though it's time for good night. I've been doing some packing and organizing for our trip home tomorrow. But I had to write an entry so that everyone would know that things are OK. We've found that if we don't put something up everyday, people wonder if things are OK.
We fly home tomorrow evening at 8:30 and arrive in Vancouver at 11:30pm. So I don't think there will be a blog entry tomorrow night but you never know. I'll try to get something up on Sunday morning at least.
So until then, have a good night and Thanks for thinking about, praying for and sending positive energy to Hannah.
Lots of Love
Hannah, Kathie, Allie, Tore and Dorothy.
October 19 Hospital dischageHey everyone,
It was a day of hurry up and wait but in the end we are happy because Hannah was dischaged from the hospital. Hannah night was restless and full of interruption and so she didn't get a good night sleep. It seems in a hospital where you would think that they would want to you get lots of rest to recover, they would leave you alone to sleep. But instead they wake you up to run checks every few hours. This is a good thing of course and we appreciate that the nurses are doing this to ensure Hannah is doing well, but it sure doesn't make for a restful night. Kathie stayed over at the hospital and called about 8:30 to let me know they were awake and things were OK with Hannah.
I arrived there a couple of hours later and found that the plan was to have a swallowing test done and to have a check of Hannah's potassium. The swallow test would be done in the x-ray room and Hannah would have to swallow some yucky barium and they would look at it in X-Ray. I helped Hannah do this and looked at the image. It was interesting the see and Hannah did really well with all three mixtures they wanted to test with. They did suggest some things that we have already been doing and were pleased with how Hannah was doing. We have to be careful how much she has in her mouth at one time and that she clears it out well before taking anything more in.
The potassium test seemed to take forever. First she needed to take a potassium supplement. That took about an hour to get from the hospital pharmacy. Then it was supposed to be a two hour wait time before drawing blood to test. The two hours turned in to 3. Then about an hour to wait until the blood work was know. This turned out to be about 2 hours. And the result was good, her potassium levels were in the normal range. That's when we got the word that we could be dischaged and could leave. Getting the discharge papers done and orders given turned out to take another 90 minutes. Oh well, it was time well spent. We wanted to make sure Hannah was well enough to be released.
Now we turn our attention to getting a doctor and coming home. As mentioned yesterday, we have a couple of leads we're looking into. We also have some friends and family looking into getting a doctor for Hannah that will sign the forms. We are flying home on Saturday night and will arrive about 11:30pm. Yeah it's late but it's a direct flight and the kids will hopefully fall asleep on the flight
Friday we have an appointment at the clinic to go over what more they can do to help find a doctor. They have had doctors in BC sign up before and we're hoping that either they can give us some names to contact or contact them and see if they would be able to help us out. We'll also be starting to pack up a few things and getting ready for our flight home. It's amazing the things you collect after about 4 weeks away. Most of it is food that we will either have to eat or throw away but there are odds and ends we need to pack up.
Anyway, we're looking forward to getting home and sleeping in our own bed and being back in our house. And of course seeing all our family and friends. We've missed everyone very much and have loved all the support we've had while we've been here.
Looking forward to getting home!
Lots of Love,
Tore, Kathie, Hannah, Allie and Dorothy.
October 18 A not so Happy Birthday...Hey Everyone,
So today wasn't such a good day. Let me start by saying that Hannah is doing well now but is in hospital overnight.
Our day started early with Hannah waking up around 6:00 wanting some water and needed to be changed. The problem was she wasn't able to hold up her head and she seemed a little more tired then normal. She wasn't able to drink and her speech had become almost impossible to understand. Just a few hours earlier, she had been sitting up well and drinking without any problem. This was a little concerning to us and we called into the Dr that is on call at the clinic. She suggested we give some extra steroid and see if she improved. We did that but there was no improvement. By this time it was almost 8:00 so we decided to to head into the clinic. When we got there she still wasn't improving. During her vitals check, we found that her breathing wasn't bringing in quite enough oxygen. Another extra dose of Decadron but no improvement. So the Drs wanted her to be taken to the nearest hospital becuase her breathing wasn't very good at that time.
So a short ambulance ride later, we were at the nearby hospital and and having a chest X-ray and CAT Scan done. The Dr told us that she thought that Hannah had pneumonia and order Anti-biotics. As she put it, "I'd rather treat it, then not." Giving us the impression that it wasn't to serious and would be easily resolved. But they did want to transfer her to the Childrens hospital for observation and some additional tests if needed.
Another ambulance ride and Hannah and Kathie arrived at Herman Memorial Children's Hospital. I went to the hotel to get Dorothy and Allie and would meet then at the hospital. When we arrived, Kathie told us that they didn't think it was pneumonia but only some shadows created by Hannah's position when the x-ray was taken. That was sure a relief. Were were concerned about the pneumonia. Mostly that she would need to remain in hospital and not be able to get home soon.
They did want to keep Hannah overnight as the CAT Scan showed hydrocephalus, but we knew this. As they had no other images for comparison, they have asked us to get them copies of Hannah's other scan for them to compare with. There has been talk of a shunt being put in but we'd like to avoid doing that here in Houston if it's not urgently required. We'd like to get home first and then see if it's needed when we get home.
So when I left the hospital, Hannah was sitting up, drinking, eating, playing and even speaking pretty clearly. It seems that whatever happened was only a short duration thing and had improved as the day when on. Funny thing was, she hadn't had a Decadron dose since about 6:00am. And she was looking good.
We were told that at the clinic that they often, actually just about always, see patients with increased symptoms before they seem improvement. And if this is a case of increased symptoms due to tumor breakdown, that's great news. They are going to review the Scan at the clinic tomorrow and hopefully they can get an indication if the tumor is being affected by the ANP treatment.
So, once again, Kathie birthday is spoiled. I think we may move her birthday to sometime in November. At last report, Hannah was doing well, but was a little congested. Kathie had said that a respiratory Dr had come by and had managed to help Hannah clear her airway better on her own.
We have had some feedback on getting a doctor for Hannah. We'll be following up on this in the next few days to see if those leads pan out. The clinic is also going to provide a contact list of Drs in Canada and Washington State that might be able to helps us out.
I will be going to bed now and getting a good sleep. I'm sure that Hannah and Kathie will do the same as there are probably not going to be any interruptions for drinking. Still might need to change her but that should be a quick change.
We will be trying to get Hannah checked out of the hospital on Thursday and then make an effort to come home on the weekend. We're getting tired of being down here and want to get home. We'd also like to get Hannah back home, back to her, and our, familiar surroundings.
I'll update again tomorrow with Hannah's status. Have a good night.
Lots of Love,
Tore, Hannah, Allie and Kathie, and Dorothy.
Bureaucratic EntanglementsHey everyone,
Hannah had a pretty good day today. From the time she woke up until bedtime she had a little more energy and was eating and drinking and speaking just a little bit better. We measure improvements in small increments and so anytime she eats without coughing, drinks without dribbling or speaks a pretty clear sentence we feel good and let Hannah know that she's done well. And that makes her feel good. The Drs at the clinic feel that Hannah is doing well. The medication for Bag one was increased to 200, that's just 20 shy of the maximum dose. The flow rates remained the same and that seemed to have helped Hannah have a good day.
The one snag that we've run into is purely bureaucratic. The Phase 2 trial that Hannah is enrolled in at clinic here in Houston is conducted under the US FDA (Federal Drug Administration) and all it's rules and regulations. One of them being that we need to have a doctor sign a set of forms, called the 1572, saying that they will be willing to take over care of Hannah once she returns home. What we were told and our understanding of things when we first started here, was that the Dr at home would be responsible for a monthly check-up, any perscriptions that might be required and ordering blood tests and MRIs and such things. The Clinic here would take care of the medication, and working with us to provide treatment for Hannah. Dr. Hukin had agreed to do this for us before we left on that basis.
What they didn't tell us about the form was that the Dr that signs the form has to be willing to become a co-investigator for the study. There lies the snag. Dr. Hukin, being employed by Childrens Hospital can't just sign onto a study without proper approval from different bodies, such as the hospital board, some kind of ethics review and a couple of other things that will make it difficult or immpossible to sign the documents and even then could take weeks to get approved. She is willing to sign and has sent a letter to the Clinic here saying that she will take care of Hannah when we return, she just can't sign the form the FDA is looking for.
However, the FDA requires that the form be signed before we can be dischaged and sent home with Hannah still on the study. The letter is apparently not enough for them. We are free to leave when we want but without that form, Hannah would have to be taken off the study. That means that she would no longer be able to get the medication.
So this is our problem. We need to find a doctor, preferrably in the Vancouver area, but they could be anywhere in Canada; Calgary, Victoria, Moose Jaw, Thunder Bay, Quebec City or even Halifax, that will be willing, and able, to sign the form and look after Hannah once we get home. According to the clinic, this doctor needs to be an MD, not necessarily any kind of specialist in Oncology or Neurology. A family doctor or pediatrician is fine. We can continue to see Dr. Hukin at Childrens but she wouldn't be able to provide the monthly physical exam or order blood tests and MRIs and such that would relate to the Study Hannah is on. The difficult part will be getting a doctor to do this because they have no familiarity with Hannah, and/or with the treatment she is getting now. We will talk with the Clinic about options in this regard but they may not be able to recommend anyone in our area. Bottom line is we need a doctor that is willing and able to sign the form and to take on Hannah as a patient. If anyone has any ideas in this area, please, please let us know.
Exactly one year ago, Kathie and I were in the ICU at Children's Hospital at Hannah's bedside. Hannah was recovering from an MRI that told us that she had two tumors in her brain. We had no idea what would be in store for us over the next year. It's had it's ups and downs but we're starting this year with Hope. Hannah has beaten the odds we were given early on in this battle. She will continue to beat them and we will be there to help her fight every step of the way. So many people are behind her in this battle and everyone one of them is helping her on this journey. I know that if I could change places with her, I would do it in a heartbeat. So would anyone one of us, I'm sure.
We appreciate everything that is being done for Hannah. The support has been tremendous and we love you all for that support.
Lots of Love from Houston
Tore, Kathie, Hannah and Allie; and Dorothy
PS. Kathie's Birthday is Oct 18 and that is now officailly today. So please join me in wishing her a HAPPY BIRTHDAY!! Kathie has been amazing through this whole experience. Her love and strength have helped Hannah and myself in ways that can't be easily described. I'm a lucky guy to have found her wandering the aisles of Ikea looking at furniture. Kathie, I Love You. October 16 Severe Thunderstorm Warnings...Yes, we've been listening to severe thunderstorm warnings and tornado warnings... if you can believe it.... The rain has been incredible. A quick run to the grocery store across the parking lot got me totally soaked, and that was in the 12 seconds that I was outside. Thankfully, the tornado warnings were on the eastern part of Houston, we're on the west side of the city.
So the weather has been a bit wacky while we've been here. The first two weeks were hot and humid and now we have a little cooler and humid and raining. We're looking forward to getting back to Vancouver and to weather we know and love.
So Monday went OK at the clinic. Hannah is now at maximum dosage for Bag 2. Bag one will be there in a few more days. The flow rate of the meds has been slowed down from the maximum so that we can see how Hannah does on a slower infusion. We think she does better and we're going to try it at the slower rate to see if that holds true. We've run into a delay getting the forms completed back in Vancouver so we can get home and stay on the study. The clinic and FDA need to have the Dr in Vancouver sign a form agreeing to do certain things like regular checkups, perscribing medication as needed, ordering MRIs and such. The Dr we have asked to do this, Dr. Hukin, is going though the process but apparently needs to have some additional approval from either the hospital or her peer group. This should just mean a delay of a couple of days at most. We'll keep you updated with our anticipated travel times.
Hannah as been doing OK today. She did have some congestion and we gave her the 'Smoke Machine" medication. This is her ventalin (sp) that helps her breathing. As we've mentioned, we have seen some indications that Hannah is improving, even in small ways. We have also seen some changes the other way. It's not much but some things she does, aren't quite as good as they were a few weeks ago. Other things have improved. It's hard to know just how much change for good or bad. We've been told that this treatment may cause additional symptoms so we do expect to see some of that. The true test of how effective the treatment is will be on MRI. That should happen 3-5 weeks after we get home. The Clinic wants Hannah to be on the full dose for 3-4 weeks before doing the MRI. The Drs here think that Hannah is doing well and looking good. She's tolerating the medication well and her numbers have been good. The only problems we've had is her potassium and the congestion.
The rest of us are holding up well. We're eager to get home and back to familiar places. We want to thank everyone for writing or calling or even just thinking about us. We've also been sent some packages from home and we appreciate those as well.
Well, time for me to get to bed. I've been up for to long. I guess I haven't fully adjusted to Houston time. I still think in Vancouver time.
Lots of Love,
Tore, Hannah, Allie, Kathie and Dorothy. tkhatlen@telus.net October 15 Even the Raindrops are big in TexasA very wet Hello from Houston,
It's been a very wet day here in Texas. It's been raining off and on most of the day, and it doesn't just rain here in Texas, it pours. The rain comes down like someone has a hose on and is pointing it up to the air. Just the 15 feet to the car are enough to get soaked.
We had a quick visit at the clinic today. Hannah again had a restless night and was up 3 times for drinking and a change. We know this is the routine and just have to get used to it. We will try to streamline things once we get home so that we can minimize the time we are all awake. Fortunately, we all get back to sleep pretty quickly.
Hannah medication was upped for bag one, but bag two remained the same. We've also reduced the flow rate for both meds to see if Hannah handles the dosage a little better. At the higher flow rate, she seemed to be tired and almost knocked out sometimes. With the slower flow rate, she does better. As she gets more used to the meds we can try increasing it and see how she does.
We had discussed going to the Space Centre this afternoon but with Hannah being tired after the clinic and almost asleep after lunch, we opted out, except for me. Kathie and Dorothy stayed at the hotel and I ventured out into the downpour to visit the Space Centre. It was quite interesting but I found that it wasn't quite what I had expected. Perhaps it was because I didn't get on the tram tour. The tours were delayed or canceled because of the weather. The tram tour takes you to the other areas of the Space Centre where they do test, assemble the vehicles and control the missions. That would have made it more interesting. But it was still interesting.
On my return Hannah was was watching a movie and lasagna was in the oven. Hannah had been asking for lasagna all day, so what could we do but oblige. After 3 bowls, she finally called it quits. It didn't take her long to fall asleep and after a short wake up to drink a half litre of water she has slept soundly.
We're still looking at coming home either Wednesday or Thursday. it will depend on what's available for flights and if we get everything sorted out at the clinic.
Well, it's getting late so I'll say good night.
Lots of Love,
Tore, Kathie, Hannah, Allie and Dorothy
October 14 Moving DayHey everyone,
Today we moved back to the hotel we originally stayed in. It was kind of like coming home.
The Clinic visit the morning went pretty well. We were a bit late getting there but once there things moved quickly. Hannah's night had been pretty good. She did wake up a couple of times and drank a fair amount of water. And each time she woke up, we changed her as well. The intake she has closely matches the output, not only in volume but in timing as well. We take advantage of times shes awake to change her. this way we don't have to wake her up to do it.
Bag one was again increased and bag 2 was left alone except for the flow rate being increased. This increase seems to have knocked Hannah for a loop as she was quite groggy and even slept the first time the bag was started. She seemed to better tolerate it the second time through.
Because we moved and Hannah was tired and sleepy this afternoon, we didn't go anywhere. Hannah and I stayed in the room while Dorothy and Kathie took Allie over to the grocery store for a few supplies. We had a nice roast chicken dinner and a quiet evening. Hannah was asleep just about 8:00 and Allie by about 9:30. That girl seems to have a never ending supply of energy. She goes almost all the time, it's hard to get her to stop.
Sunday we're either going to go to the Space Centre or the Zoo depending on the weather. The Space Centre is a little father away so it might get the priority but Hannah really wants to see the Zoo and the elephant that was born there a couple weeks ago. Though we may go to the zoo on Monday to try to avoid the crowds.
Well, it's late again and I'm going to end the entry here and go to bed. Thanks for all the support. We appreciate the calls, emails and odd comment on the blog.
Lots of Love,
Tore, Kathie, Hannah and Allie and Dorothy
Ants, Ants and more Ants...Okay, so it really sucked that we had to move hotels because of ants, but hey, we have ants in this hotel too... so we've come to the conclusion that we will just have to live with the ants, they will become our friends... and because the old hotel had 2 bedroom suite (meaning Grandma could room with us) we've decided to move back there - we did like it there, it was the ants that were the problem, the room was quite clean, very comfortable and the staff was really nice... so, we're moving hotels again tomorrow - those keeping track - we're moving back to the original hotel we were at, the phone number will be the same - different room number though, we requested another room in another one of their buildings, in hopes that there will be no ants there - stay tuned for that.
Anyway, you gotta think that it must not have been a bad day if I start out by talking about the ants in the room... well your right... Hannah had a pretty good day - as usual the first dose of the treatment knocked her out and she had a nice little nap at about 2:30... afterwards she was REALLY craving lasagna so Tore picked up Olive Garden Lasagna for her - a full adults plate of it... and low and behold she ate the whole thing... it took her two hours, but she ate it all! So that is good - her appitite is back and in full force, when she had that cold and congestion she wasn't eating so well, but now its back. Mom, Allie and I managed to get to the mall for a few hours tonight - it was nice to just walk around - I had been to the mall 2 or 3 times, but didn't have time to look, you know there was a time when coming down to the states meant that there were tons of different shops and styles of things, but not so much anymore - they do have a few different stores, but much of the same things down here... nice to look around though.
Well we met with Dr. Weaver, he'll be out of town next week so this will be the last time we see him on this trip... he thought Hannah was doing VERY well and said so, about three times... it was nice to hear! We knew she was handling everything well, but it was nice to hear that he thought so too. He upped bag 1 and left back 2, he said that as long as she was handling everything alright he'd get Dr. Barbara (who will be taking over Hannah's care while he is away next week) to up bag 2 on Monday. At that point she will be getting her maximum dose of bag 2... we will probably reach our maximum dose of bag 1 a week today or perhaps next weekend. This is great news... this means that right now Hannah is recieving enough medicine to be doing some serious damage to that monster. Dr. Weaver also said that he would like us to try and get an MRI in about 5 weeks... so we'll be booking that when we get home.
Anyway, I should get off to bed... big day tomorrow - we're moving and also planning to go to the zoo (weather permitting - we've had "severe lightning storm warnings" down here the last couple of days) there is a new Elephant there (born October 1).
Hannah woke up about 1/2 an hour ago - woke up Tore and I to drink some water and have a change, we realized that we hadn't blogged tonight - so I had to come out here and write a little something... I know some of you wake up and expect to read the blog... I didn't want to disappoint.
We miss everyone very much and plan to be home Wednesday or Thursday next week, we'll know more about that tomorrow... anyway, thanks for reading... praying... wishing... writing... thinking about us... and sending positive energy, we appreciate it very much.
Lots of Love, Tore, Kathie, Hannah, Allie and Grandma! October 12 Another Good DayHey Everyone,
It was another good day here in Houston. Hannah continued to do well today. She had a pretty good night with a couple of wake ups for water and a diaper change. Our biggest frustration is keeping her dry and comfortable. The treatment puts a lot of fluids into her body and makes her very thirsty. She's taking in 2-3 litres of water a day and that will go up still more. So she puts out just about the same amout of fluid. Because she's not able to walk on her own and we rarely have time to get her to the toilet on time, she has on diapers. During the day it's not to big a deal, she usually lets us know when she needs to be changed. However, at night it's a little more challenging. We are trying to figure out what works best to contain the output without causing overflow, but still is comfortable for Hannah to sleep with. We have experimented with various products and methods and none have been completely successfull. So we continue to modify and adjust. It's quite frustrating at times for us, but Hannah seems to be taking it in stride. She doesn't seem to care if she needs dry PJs two or three times a night. She just wants her water and to get back to sleep.
The clinic checkup was great except for the potassium again. It's still low, so we have have upped the supplement. Everything else checked out just fine. Her lungs sound clear, her breathing is good and she's feeling good. Bag one was increased again today and bag two will probably be increased tomorrow.
Today Dr. Weaver asked us what we thought about going home. He thought that we should be able to get home next week, probably later in the week. We're thinking Thursday would be a good day to fly home. Both Tuesday and Wednesday have certain memories attached to them. Oct 18 was the date that Hannah was diagnosed with two brain tumors. It will have been one year. This year the 18th falls on a Wednesday but last year it was a Tuesday. It's hard to believe it's been almost a year that we've been battling the cowardly monster. We have learned more about cancer, brain tumors, MRI and chemotherapy then I ever wanted to learn.
I am contanstly amazed at how strong Hannah is and how she's coping. Not much seems to get to her. Unless we don't get her Mushrooms soup or baked potatoe to her quickly enough. Our family was dealt a major blow but we've remained strong and commited to getting Hannah well, whatever it takes.
Hannah has been on the ANP treatment for two weeks and I for one have seen some small changes in Hannah over that time. It may be just a fathers wishful thinking but she's able to move her left arm and hand more then she did a couple of weeks ago. Her speech, while still very weak, seems to be clearer. There is still a long way to go but I feel we've started down the right road.
So on that note, I will say good night and have a good day on Friday.
Lots of Love,
Tore, Kathie, Hannah, Allie and Dororthy.
October 11 better day...Hi... Good evening everyone... today wasn't too bad - Hannah did very well last night after the not so great early evening... she managed to sleep soundly and only woke up once for some water and a change... it was quite nice to have her disconnected from the pump, she slept soundly and so did we. Although I have to admit that I was quite pleased when she reconnected this afternoon - I don't like her being off that medicine for too long... they increased bag one again today and yesterday they did bag one and two (even though she only got 2 doses).
We got to the clinic around 9:30 this morning and the did a blood test and we met with the Dr.. Dr. Weaver checked Hannah's lungs because she had such a difficult evening... and he said that she sounded very clear and not wheezing at all - so her congestion had all cleared up - he seemed quite pleased, even dispite her evening.
So, her potassium was low today, which is not suprising because she didn't eat too much yesterday, so they gave her some IV potassium and got it up to above normal level - and then we started the treatment again... the first dose knocked her out - she was pretty tired after bag 2 went through and had a nap from about 6-8:30 when we woke her up to give her some meds, dinner and get her into her pj's. She was up for about an hour and a half and is now sleeping soundly. The next dose will be starting fairly soon and I'm sure she'll wake up thirsty. She can polish off a 500 mL bottle of water in about 10 min. Her drinking and swallowing has improved and she is not coughing anymore - I think the congestion had a lot to do with that, so we've put the nose hose idea on hold for the time being - hopefully that is something we don't have to revisit... she had some spaghetti for dinner (her new favorite food) and a big bowl of organic applesauce. Its hard to get really good meals into her down her, but we're trying, today we were just happy she was eating.
Anyway, I want to thank everyone for the emails and thoughts - we had over 500 hits on the blog today - the highest we've ever had... its nice to know that many people are thinking about hannah - and with all of these good thoughts, prayers and well wishes she is going to get better even quicker! We truly appreciate it more then we can express. Thank you. (and please keep them coming :) )
Well, good night and we'll write again tomorrow... Lots of love, Tore, Kathie, Hannah, Allie and Grandma xoxo
October 10 A long and tiring day...Sorry folks but I'm going to keep this short. I'll update more tomorrow as it's really late and I've half asleep. Hannah had a really good morning and a fairly good night. Her afternoon however wasn't so good. We gave her a medication called Pentamadine this afternoon and she doesn't seem to have taken it very well. Normally at home when she gets it, it's a once-a-month anti-biotic, she had no problem. But today it gave her some nasty congestion. We got it cleared up in time for bed and she is sleeping quietly now and we're hoping she'll get a full nights rest. We took her off the treatment because she was not feeling well and wanted to make sure she got some needed rest. I'll fill in the details on the next entry.
Plus we moved hotels to the Candlewood Suites. It's a little closer to the clinic but instead of a 2 bedroom suite we have a one bedroom and a studio. It's not ideal but it's ant free. We found ants in the room at the other hotel and that was the last straw. More about that tomorrow.
As I said, Hannah was good in the morning and early afternoon. She's sleeping well now and I'm hoping it will contine through the night.
We'll give a full report tomorrow. Have a great night and a wonderful tomorrow. I'd like to send out our best to some of the kids that are having a tough time right now battling this monster. Leo, James and Chase are in hospital, we're hoping for a speedy return home. Kate had an MRI today and we're hoping for a good report for her. To all the other kids, we send our best and hope you all have a good day!
Lots of love from Houston,
Tore, Kathie, Hannah, Allie and Dorothy.
PS, there was a severe thunderstorm warning here today and it was kind of neat to see how fast the storm rolled over the city. The front moved at about 30mph and the rain only lasted for about an hour but it was enough to leave several inches of rain in many places. At least the weather is cooler now! October 09 Not the best of daysHey Everyone,
Well today wasn't the best of days for Hannah. She was a little tired this morning, we all were actually. It was another long night with a couple of breaks for water and change of diapers and pad. The last few nights Hannah has been waking up at least twice and sometimes three times a night to drink. And what she drinks we change her and make sure she's dry and comfy. Befre the treatment started we had a hard time getting her to drink water, and now we have a hard time getting her to stop.
She she woke up she was really tired and had trouble holding her head up. We understand this can be from both being tired and the Decadron/Dexamethasone. She got stronger as the day went on and was OK later in the day, still tired but able to hold her head up and eat and drink normally. We got lunch today from a southern U.S. Deli chain that had enormous baked potatoes. With different toppings. The potatoes are at last 6inches long and 3-4 in diameter. About the biggest we've seen and more then a meal when fixed up with a yummy topping.
I'm going to keep this message short as well. Being tired will do that. Things are going well, the bag 1 medication was increased today again. And we'll likely increase bag 2 tomorrow. Potassium was in the right place and sodium as well. We also received a couple of NG tubes from Childerns' in Vancouver. Thanks Suzanne. If needed we'll put on in tomorrow. It will depend on how she drinks and eats.
Looks like we'll be moving rooms at least and probably Hotels on Tuesday. Yesterday one of the drawer facings fell off when Kathie tried to open it. Plus tonight we found ants in the kitchen. They have offered to move us to a new room but I think we'll be looking for a new hotel. We'll update with the new location when we know it.
Well, good night everyone. Hope you had a good Monday.
Tore, Kathie, Hannah, Allie and Dorothy. October 08 Happy Thanksgiving...Hey Everyone, It's another October Sunday in the US but back home in Canada, it's Thanksgiving Sunday. By now, the Turkey and mashed potatoes would have been consumed, and many pies eaten. To all our family and friends back home, have a plate set aside for each of us, because we'll be having some turkey when we come home. Here we had a really nice dinner of roast chicken, mashed potatoes, corn and even pie for desert. Well, I actually had chocolate cake but Kathie and Dorothy have pumpkin pie. Our day was pretty good. We had a good appointment at the clinic. Everything went smoothly. Bag one was increased and Hannah's vitals continue to be good. Her potassium level stayed in the normal range. After the clinic and a quick lunch we headed off to the Butterfly museum at the Houston Natural History Museum. Hannah really enjoyed this the last time we were here so we had to go again. She wanted Allie and Grandma to see the butterflies. We spent at least 45 minutes walking around and trying to get the butterflies to land on us. We did get one to land on Hannah and that's the picture that's shown. We also posted a few of the butterflies and a couple with Allie in them. It was a quick visit but a fun one. Once back home Hannah wanted to put her feet in the hot tub and pool. This is something that Hannah has wanted to do for a while. So we walked out to the pool and set Hannah on the edge and dangled her feet in the water. It was to hot to do it for long but it was a nice break. We had a nice dinner and by that time, Hannah was pretty tired. She didn't last long once her head was on the pillow. She slept better last night and we're hoping for the same tonight. Well, Hope you all have a great Thanksgiving, those Canadians anyway. Lots of Love, Tore, Kathie, Hannah and Allie and Dorothy. October 07 Another weekend in TexasTurns out that the temperature can be lower then 88 degrees in Houston. The whole time we've been here the temperature hasn't dropped below 88F. Today when we left for the clinic just before 9:00, it was 78. That equates to about 20 degrees celsius. And the humidity had dropped quite a bit and wasn't to bad at all. Almost like home. It was a welcome break from the heat and high humidity that we've been having.
The clinic appointment went well. Bag one was increased to 100Mg and Bag two remained at 15mg. We changed the duration of the infusion of Bag two to 20 minutes from the previous 9 because Hannah seemed to be getting a bit of the shakes from the dosage. This isn't to unusual so the Drs at the clinic though she would better handle the dosage over a longer time. Seems they may have been right. The subsequent infusions all have gone well. Also, Hannah's potassium level has increased and is now in the normal range.
After the clinic we headed back home and had some late breakfast/early lunch. Then it was off to the aquarium. The Houston Downtown Aquarium is not that much different from our hometown Vancouver Aquarium. A bit more commercial perhaps with some rides and a small midway. We started out in the indoor exhibits. Most of it focuses on the local environments, bayous, the gulf coast and lakes and rivers in Texas. The most interesting displays, at least for me, were of the turtles and the shark tank train. They also have a couple of white tigers in what they call the "Maharaja Temple". It's a somewhat spartan exhibit for two beautiful animals. They would be better served in a nice partially outdoor enclosure. Still, it was exciting for Hannah and Allie and they really enjoyed it.
Hannah really like it all and especially the shark tank train and the tigers. I've uploaded some pictures from the day.
We ended up back home in the later afternoon. Hannah and I had a nap while the Kathie and Dorothy took Allie to the supermarket for some dinner shopping. After dinner and quick bath, Hannah had had enough and was in bed by 8:30. She fell asleep shortly after that has has slept since then. She'll probably wake up soon, needing something to drink.
So, with a fun day behind us, we're looking at heading to the zoo on Sunday if the weather continues like today.
Till then, Thanks for the emails and calls.
Lots of Love,
Tore, Kathie, Hannah, Allie and Dorothy
October 06 Tired in Texas...So todays update is going to be a short one. For the only reason that we're all tired and i'm going to fall asleep at the keyboard soon if this goes on to long.
We didn't have a very restful night. Hannah was up at least 3 times so you can imagine that neither Kathie or I got much sleep. Not that Hannah did either. The 8:00 alarm came to early.
The appoinment at the clinic went pretty well. Both bag dosages got increased so that's a good thing. Her potassium is still low so we've upping her supplement to compensate. Hannah's vitals are good and have been since we started the treatment. Kathie and I are both doing well with preparing the bags and getting things hooked up.
It ended up be a long day at the clinic because we had to do a bag change. And for that we have to wait until one dose of each bag has run through completely. Plus there was a blood test, and we can't start until the test is complete and results known. Hannah was so tired this afternoon she almost fell asleep a few times. We watched the Disney/Pixar movie Cars with dinner and by the end Hannah was over tired and a little cranky. It didn't tell her long to fall asleep though and is now sleeping peacefully.
And so will we. With that, I say good night.
Lots of Love,
Kathie, Tore, Hannah, Allie and Dorothy.
October 05 To Hose or not to Hose.Woah. What a day. As I mentioned yesterday we had planned to get a feeding tube for Hannah. We had an appointment at 9:30 at a clinic to get it done. Well, the first mistake was ours, we were actually supposed to be at the hospital out-patient clinic. That was OK, it could be done at the clinic. They would need get a tube brought to the clinic. OK, that wasn't so bad, the hospital was reasonably close by. So after waiting around in the lobby for about 25 minutes we had to wait for the tube to arrive. While we were waiting, we tried to get some to tell us how much this procedure would cost. Being from Canada, we have no insurance that would cover this kind of procedure. We could pay up front and then try to get the money back once we get home. However, no-one could or would tell us how much it would be. After about 2 hours the tube finally arrived. The Dr. brought in the tube and we were surprised to see that it was quite a bit larger then we had guessed it would be. The plastic was thicker then the tube Hannah has before and more rigid. With a little fuss and tears the tube was placed. There was no way the tube could be taped to her cheek like we used to do. This one would stick out from her nose, like an elephant trunk. And Hannah clearly didn't like it. We were both upset about it and how Hannah was feeling. This tube would not work out long term. It was awkward from a practial point of view, it would be difficult to put clothes on, have a bath and even have a glass of water. So we decided to have it taken out. It was an emotional few minutes while it was put in, checked and then ultimately removed.
But it was in Hannah's best interest. She had been doing better with her drinking and eating the night before so it's probably not a bad thing that it wasn't there. Today after the we got back to the Burzynski clinic, Hannah's drinking and eating were better then they had been in a couple of days. Strange but true. She had a big dinner and ate without any problems. Her drinking was pretty good as well. Only a couple of coughs. Her breathing seems to have improved as well. The congestion is much lighter and she's able to clear it much more easily.
Hannah had a good check up at the clinic although her potassium is still on the low side. So we have her on a potassium supplement now. However, Dr. Weaver still increased bag one of the ANP. Tomorrow, both bags should go up if everything goes well.
Its so nice to see her feeling better today - her speech has improved a bit today as well as her energy level... she was pretty tired tonight so she wasn't so happy near the end of the night. It took only a few minutes before she fell asleep. And that's where I'm off to now.
Lots of Love,
Tore, Kathie, Hannah and Allie, and Grandma Doroty.
October 04 Some improvementOK, so today wasn't really different then yesterday for Hannah. She is still congested and it's making her breathing a little raspy. And she is having a little difficulty with her drinking. Although we did make an interesting discovery tonight; warmer liquids seem to be easier for her. She drank her chicken broth with hardly a cough but the cold water she likes, caused a cough just about everytime she took a sip. Early in the evening she managed to clear some of that congestion and perked up quite a bit... it lasted about an hour or two before she started getting it back - however, not as bad as it was. Its good that she does manage to get it cleared though.
We've been thinking about getting a feeding tube for Hannah, also known as a "Nose Hose". This would make it much easier for her to get plenty of fluids and nutrition, and we can do some of her meds that way as well, plus we don't run the risk of asperation when she's coughing on her water. The clinic has contacted a Dr. to get it done tomorrow. If we don't use it, that's OK, it will be there if we need to.
Otherwise, Hannah has been doing well. She's handling the Anti-neoplastons, also called just ANP, just fine. Dr. Weaver has increased her dose again today. We asked him if he thought that the ANP could be working already and causing the tumor to be breaking down. And the breakdown to be causing an increase in symptoms. He thought it unlikely but still very possible. Every patient will have different reaction of course. We're hoping its early response!
The last couple of days, we've been giving Hannah some medicine that helps open her airways and make it easier to breath. She calls it her "Smoke Machine". We shopped around and found that we could rent one for $20 a week with a $100 deposit, we would also require a prescription from a doctor. However, we could buy one for $40 and didn't need a prescription. More strange and mysterious happenings from the medical system. Since we had use of one before and do now, and may in the future, we decided to buy one.
Anyway, we'll let you know what happens tomorrow... take care and please keep checkin' in... we love the emails and phone calls from everyone - keep them coming - its so nice to read them when your so far away from home. Please keep those prayers, thoughts and good wishes coming as well - we could use those for sure!
Lots of Love,
Tore, Kathie, Hannah, Allie and Grandma from here in Texas!
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