AmberLee Jensen

I am going to be posting pretty much everything on our family blog now. I will keep AmberLee’s blog accesible but I will no longer be posting there. Thank you everyone that read and made comments. It was a huge boost to our moral to hear from everyone while we were going through everything.

I should have posted this last week, but I have been slacking a little bit. I am trying to rededicate myself. Two weeks ago she had a petct scan, and last week we got the results back and she has been pronounced clean of cancer!! Everything was normal. It has been a tough road and we have been so blessed.

She has been doing pretty good since she has been home. The only obstacle is getting her energy back which has been a very tough thing to overcome. Also she has been having a reaction, which is common, to always be cold. It doesn’t matter what the temperature is in the house she has 3 blankets on her. According to the doctor’s it should pass in a few months.

She had a bone marrow biopsy yesterday and we’ll find out about that next week, but everything points to the positive. I will keep things up to date as much as possible.

My Dad made a comment the day we were coming home that really struck me. He said it’s like you guys are starting your life together all over again. It is so true. It just has a different feel being home together. Everything is put into a whole new perspective. I see everything through different eyes so to speak. All the things that I took for granted before I’d like to think I am not now. For example right now Brennan is helping AmberLee with her nightly IV. She has to flush her lines before she starts and Brennan likes to push them in for her. It’s moments like this that I think are taken for granted.

AmberLee is doing well. She has been a little tired from the move, and has also been very cold which we don’t quite understand yet but it is something we are going to be bringing up at her next appointment. She is very excited to be home and be able to be with her family again. It was definitely a long 3 1/2 months.  It’s nice to just be able to sit outside on our own front porch together and watch Brennan ride his Tricycle he got for his birthday.

To answer Josh’s question (comment he left on the last post) Her appointment was Thursday and as soon as we got down there on Friday we were packed up and gone by 3 in the afternoon. There was no reason to stay any longer than necessary. You can imagine she wanted to get home as soon as possible.

As of right now we don’t know how long she will be on the IV’s. I just asked AmberLee that and she said, “Until they tell me to stop.” So as long as she has to do the IV’s she will have to keep in the port. She will also be going down to Salt Lake once a week for follow up appointments until further notice. Her mom will be taking her down to those, because I will be  working.

All in all it has been a good first weekend home, just for the simple fact that we’re home.

This Saturday is the day! She has her final appointment today and if everything goes well she will be home on Saturday! It will be so awesome to have her home and to be in our home together again. The one downfall to the whole thing is that Brennan has had so much fun living with his 2 cousins Zachy and Kyler. They play together everyday and have become very close. They will be heading back to Texas for a few months and then when Tad is deployed they will be back for a year and some change.

     One thing I forgot to mention is that AmberLee is finally off the prednizone. That is a blessing in it self. It takes a toll on your body in more ways than one. Also her hair is starting to come back in. It’s still a little thin on top so she is shaving it until it comes in normal. She is so excited to come home.

    I also want to send a special thanks to Sister Udy and a few other sisters in the Relief Society. They came over to our house last week and helped me a ton in getting the house ready for AmberLee to come home. The house has to be dust free for her to be able to stay there and they did an amazing job! They have been amazing! As has the entire Ward. Thank you all so very much!

   With AmberLee coming home this Saturday, from what I understand, she will have been released to go home faster than anyone ever has from a bone marrow transplant from LDS hospital and their program has been in operation since the late 1970’s. I know everyone’s prayers has played a major part in that. Thank you all for everything you have done.

   Also I want to thank Focus Services, AmberLee’s work. Without all they did for us we would never would have been able to make it through like we did. If ever there was a company to work for that is sincerely interested and willing to take of there employees it is Focus.

  Man this is turning into a thankamony. I guess while I’m at it I’ll continue. All those that donated money and time in whatever capacity thank you so much.

AmberLee had her appointment with the Doctor today and everything is going great. She will finally be able to get off the prednisone on July 13th, and it’s still looking great to go home the end of this month. She also has Brennan down with her right now, and she’ll have him until Sunday night. She is starting to get her energy back and her hair is some what starting to come in. She is still shaving it until it comes in thick or she’ll look like an under watered chia pet. I can’t tell you how nice it will be to be back in our own home together again. It will be awesome. Also AmberLee’s mom is going to be getting a break and my mom is going to go stay with AmberLee for a week while she’s at girl’s camp. I don’t know if I’d consider that a break, but it will be fun for her to go camping and get away for a while. She has been so amazing to stay with AmberLee this whole time! Well that’s about it. Thank you all and I will post again soon.

Well, I know it’s been a while since I last posted but in my defense it has been pretty uneventful as you see by the title. She is continuing to get better. Hopefully going to go home within the next month. It will be so nice to have her home. It has been so hard for Brennan and I not to have her with us all the time. What a blessing that you take for granted sometimes.

She still has her days where she just has no energy. Also the nausea is really bad in the mornings and she hates taking the medicine for it because it knocks her out. It’s a lose, lose situation. She did have a checkup today, and everything looked good. Nothing to report in other words.

It’s Brennan’s birthday on the 24th so we’re going to have a small birthday party for him down at her apartment. We are excited for that. He is doing so well. Speeking more and more everyday. I will be posting more pictures soon.

If there is anything in particular anyone wants to know feel free to post a comment, and stay on me about it and I will do posts answering your questions.

Thank you all,

This post is a long time coming. I apologize for not posting sooner. Things have been so hectic lately with work and also it makes a big difference that we don’t have internet here in the apartment. I wrote a majority of them while I was in the hospital. I will try to remember everything I need to post, but most likely I wil forget something so I apologize for that. It will be posted later.
AmberLee is doing good. She would say great, but she has had some difficult trials placed in her path. The side effects of the medicine are starting to show and they are difficult to bear in more ways that one. First off, one of the side effects of prednizone gives you a moon face, chipmunk cheeks, whatever you would like to call it. That as you can imagine has been very difficult for her. It would be for anyone. It is changing the way she looks but she is still as beautiful as ever. The positive is that it is not permanent. As soon as she goes off the prednizone her face will return to normal. Another side effect of the prednizone is achey joints. She already has a small amount of arthritis that manifests in storms but the prednizone is magnifying that and not waiting for the storms. She woke up last week I was here and she thought she had done major damage to her knee. We iced it, put daniels ointment on it and everything. Eventually it began to feel better. Then the next day it was the other knee. It is getting a little better now. Not so unbearable. She is also having severe acid reflux that is keeping her up some nights. I know this sounds horrible, but it isn’t unexpected so they have ways to help her deal with it and she is comfortable most the time.
She had another checkup last Tuesday and everything for the most part went well. She got there the first time and all the immediate tests were good, but when they got back to the apartment they received a call and they wanted her to come back to the hospital. When she got there they told her that a virus that she had been taking an experimental drug to prevent was showing up. I’m going to do a little background on this for those who don’t know what I’m talking about. There is a virus that 70% of all people have had. It is very similar to the cold (don’t quote me on that) and your body can fight it off, but the difference is that after you get this virus you will have it for the rest of your life. A normal immune system will keep it at bay and you’ll never even know that you had it let alone still have it, but a suppressed immune system, AmberLee, could end up being fatal. AmberLee was tested for this virus and was found to have it. They gave us a choice to try an experimental drug that has shown great success at stopping this virus from resurfacing. We decided to donate her body to science and give it a try. The one catch was that they needed to see the effects from both sides. The way they did this was by flipping a coin. You either received the medicine or a placebo, and that gave them the data they needed. Anyway back to the story. When she found out that this virus had resurfaced they also told her that she had received the placebo. She now has an IV she is taking twice a day to fight the virus. Everything is going well so far and no signs of any problems.
How about we flip to the good side of things. Everything else is going so well that she has been given the okay to go to restaurants and movies (matine’s only). You can imagine her excitement. She has already been to quiznos, we went to Chili’s last night, and we even went and saw Shrek yesterday, bad movie to start with but it was still fun. She has been in heaven. She is also getting a lot of her energy back. She stills gets very tired quickly. Nothing compared to the hospital though. So that is a good sign.
As I said, all in all everything is going good, and we are optimistic to come home on time. Thank you all, and we love you.

AmberLee wanted to thank everyone for all they have done. Here is a little note she asked me to post.

To My Family and Friends!!

         First, to my home ward Relief Society Sisters: Thank you so much for the beautiful quilt! It was such a wonderful surprise and pleasure to receive something that is filled with so much time and love. Every square is beautiful, and I thank everyone who put their time into making it. My son loves his Mater Pillow! He thought that was pretty cool, too! Also to our Home Teachers who have been watching over our yard. You don’t know how much that means to us.

            I also want to thank everyone who has done so much for us. For all the comments left on the website, for the cards and the phone calls and all the love and support we receive from all of you. Also, those of you who have put money into the donation account, Thank You! You have made it possible for us to afford to be in Salt Lake for as long as the good Doc’s are requiring (end of July is hopeful homecoming date!!)

            Everything is going very well, and I know it’s due to your prayers and your love and support. Thank you all for everything you do. You are all the silver lining this particular challenge in our life has had. You have all made this so easy to bear. I love you all very much, and I cannot thank you enough.

            We will continue to keep you posted on the website. I don’t have internet access, so if you need to get a hold of me, please don’t hesitate to give me a call on my cell phone, or contact me through my awesome husband. He keeps me updated on the comments you all leave, so you’ll be able to get any messages to me through him if you don’t have my cell number.

            Thanks again and I love you all!!

AmberLee J

My info is very limited. I’m just repeating what AmberLee told me over the phone yesterday and I guarantee you I’ll miss something. She had to be there at 10:30 in the morning. They drew her blood and did a chest x-ray. Everything was perfect with her blood work. I t was so good in fact that she doesn’t have to go back until next Tuesday. Usually during the first month they have to go in twice a week. I will be going down to see her today and if there’s anything I missed I will repost. Last I heard she is waiting still on the results of the x-ray. I have a feeling it will be perfect.

It has been so nice to be out of the hospital. We are now staying in the Sky Harbor Apartments in Salt Lake. We will be here for 2 months, and then we will finally be able to go home again. It is pretty nice here. Anything is better than being stuck in the hospital.
AmberLee is doing great! She has become a pill popper. She is taking 32 a day. Hopefully that won’t be for too much longer. She is also a temporary diabetic. One of the medicines she has to take makes her blood sugar very unstable and she has to give herself insulin shots. I am doing this post from my cell phone so it is going to be short and sweet. We don’t have internet access here yet, so if you want to email her please send it through me first and I will pass it along. Also posting on the webpage will get to her. Thank you all and I will post again soon.

Well tomorrow is the big day! I just got off the phone with Amberlee and she is so excited! Tonight is her last night in the hospital! She will be staying in an apartment/hotel for a month and then with her aunt and uncle the 2nd month. It has been a journey to say the least. Hopefully we will accomplish what we’re hoping for. The transplant was to say the least a success. Now it’s just a matter of her showing within the next few months no signs of rejection. Obviously this is out of our hands, but we are optimistic just the same. It has been tough and we wouldn’t have been able to do it without everyone’s support. Thank you so much everyone!

Just a quick update with what’s been going on in the hospital. She is now eating a regular diet, and the only IV she has connected is fluids. The doctor’s are so concerned that she is drinking more when she goes home. The funny thing is she has never been a huge drinker anyway, but they’re still concerned so she’s hooked up right now, and has to go home with IV fluids when she leaves. It won’t be too bad though. They told her she only has to do it 10 hours a day so this means she can turn it on when she goes to bed and be completely untethered during the day! She is way excited about this. They also told her she can have fresh vegetables when she gets out as long as she makes sure they’re washed thoroughly before she eats. Another high point for her.

Well one step is over, and now on to the next. Hopefully these next 2 months will go by quickly and we’ll be back in our home just like nothing had ever happened.

The 16th was my birthday so I went down to spend it with AmberLee. When I got there she had great news. Everything was going so well and her levels were all so good that they were going to unhook her from the machines and let her go outside! You can imagine how excited she was.

She is so amazing. Even though she is in the hospital and going through this, she had her mom go to the store and buy a cake, birthday plates, napkins, streamers, and cards. We went outside and had a full on birthday party! It was so fun! I do have pictures that I’ll post. They’re on my phone and I need to transfer them. We stayed outside for about 45 minutes. The weather was perfect!

It’s looking like next Thursday is the day! From what the doctor’s are saying all her levels are where they want them to be for her to leave the hospital all it comes down to is her eating. She said they are going to give her chicken and potatoes today. It’s getting close.

Well, it’s been a while since i last posted. It’s been a crazy week with work and of course the Jazz! J/K! Jason did make the comment no news is good news. Well that is true in this case. AmberLee is doing so well. Last time I posted I made the comment that she might even go home this last Monday. That didn’t happen because the found some Grafter vs. Host in her stomach and intestines, because of this she has had the horrible nausea. Once they figured it out and have been treating for that her nausea has greatly decreased, and along with that her dizziness. Ever since they found the grafters in her stomach they decided to stop her eating completely until it was under control. So in other words no more food for me. :(  They did start her on water yesterday and she was able to keep it down with no problems, so hopefully she will be eating regularly within the next week or so. And if that happens she will be out of there and in an apartment there in Salt Lake.

While I was down there over the weekend we changed rooms to E854. She now has a view of the mountains instead of a wall. The room is also bigger so that helps. :)  

Thank you all for your prayers also I want to thank those that have donated money to help with the apartment and bills. I don’t know who you are but you do and thank you. It will make this all possible and we will get home and be able to get on with our lives.

AmberLee was having a little fun and wrote this little tidbit, biblical style. I hope you enjoy it.

And the Lord said unto Justin; Blessed art thou Justin, for thy blood is good, yea even the greatest among the blood of man, for it shall be even as the life giving Celestial waters flowing in the midst of the heavens. And Justin, being somewhat flustered in the ways of God, yet even so striving to understand and be a giver of life, asketh God, ‘Huh?’ And God so understood need for clarity, and He did take unto himself the task of explaining this in words he new his son would understand, saying, ‘You’ve got good blood man!’ Unto which Justin replied, ‘Oh, Cool!’ And it was.

 No she doesn’t have free time at all down there.

This is a great day for AmberLee! We heard great news from her doctor today! First of all I want to thank everyone for fasting, praying, putting her name in the temple, etc….. I know it played a big part. We found out that her transplant has already completely grafted. He made the comment that in his time working in the transplant field he has never seen one graft so quickly, and he is not a young man. I can’t begin to tell you how happy we are. Thank you again so much everyone.

Not to get everyone’s hope up or anything but since she grafted so quickly it could mean that she can get out sooner than expected. He said it all depends on how quickly her throat heals, her nausea/dizziness, and is eating normally. The only concern right now is they don’t understand why she is still so nauseous. They have tried every medicine imaginable and nothing is touching her. For example right now they have her on a patch that’s suppost to help with sea sickness. They are leaving nothing out. Hopefully something will begin to work.

You’re probably wondering why the title is called bitter sweet. Well if you go to Melissa’s, my sister, blog you will see. Tad just found out a few days ago that he will know today when he will be shipped out to Iraq for a year.  Everyone new it was coming at some time, but you always pray it will be later than sooner. Our prayers will be with their family, and especially Tad as he will be going into a very hostile environment. We know he will be watched over and protected.

Tad we love you and will be praying for your safe return.

It was a rough few days. I just barely got home from visiting AmberLee and she is doing 100 percent better. It turns out yes she was having a reaction to the shot she was getting but it was much more severe than normal. It finally got to the point that she was given the push button pain reliever with the same pain medication she had been getting as I explained in the last post. One thing she started to notice when she pushed the button she would get a burning sensation throughout her whole body and especially through her veins immediately after. She was unable to link the two together when she was just getting it normally. When she told them this they immediately changed her pain reliever to straight morphine and she has been getting better and better by the hour. She went from glossy looking and barely coherent to when I got there tonight she was standing up, the pain in her feet is gone, and picking up Brennan when he ran into the room. She was her old self again. You can imagine the relief I felt seeing her like this. It makes the last few days seem like a bad dream and nothing more.

She still has a really bad sore throat. They have even told her not to eat and even to not swallow at all. They have a suction hose in her room to solve that problem.

Wow what a stressful and scary week. Thank you all for your prayers. Everything is uphill from here and we are praying for no more future complications! We know it’s going to turn out for the best!

I’ve been putting this off as long as I could. If I had my way I wouldn’t post it at all, but the whole point of this webpage is to post all the updates, not just the happy ones. So here it goes.

Since the day after her transplant they were giving her 3 more kepivance shots to keep fighting the mouth sores, but this time the reaction was much more severe. She isn’t eating at all, they have her on TPN,  and she is having serious reactions ranging from feeling like she is sun burnt from head to toe. Compare this to the worst sun burn you’ve ever had and times it by 10. It brought her to tears. We were rotating out cold rags to cool her down. She also has a horrible sore throat, constantly throwing up, and was shaking uncontrollably. They finally were able to get everything under control and she has been able to rest a little. The reactions started to get really bad 2 nights ago, and they had her so drugged up yesterday that I saw small glimpses of her the whole day. She would open her eyes every once in a while. Also a couple of times during the day the medicine would wear off and she would start going through the same thing. Finally she had to constantly have ice packs on her hands. I felt them and they felt cold to me and she still felt like her hands were on fire. She compared it to putting your hands on a hot burner and just leaving your hands there. Then they would get her more medicine and she would be able to close her eyes again. That night was more of the same. I was up with her once and the nurses were switching out her ice bags constantly. I decided to spend the night so she wasn’t alone until her mom got there and then I went to work.

Last time I talked to her mom they had her on a drug she could give herself with the push of a button that she could push every ten minutes to control her pain. As far as I know that’s the only thing that’s letting her rest right now. I am going to be calling her in a few minutes to see how she’s doing. Now don’t get overly concerned about this. Yes it has been extremely difficult for me to see her go through this, but the doctors are continually telling me it is expected. Again that isn’t too comforting, but hopefully it will soon be over. I’m just hoping that she’s so drugged up that after this is all over she won’t remember it. She also does have a virus in her stomach but this also is expected.  We are still confident and looking forward.

Also this Sunday is Fast Sunday. Please if it be at all possible remember her in your fast.

Thank you for your prayers. I know there are so many out there and we are reaping the blessings. Thank you.

Adam

It was AmberLee’s second birthday yesterday. So all those who are planning on giving her birthday gifts. Make sure you plan on 2 days a year instead of 1. It’s a thing they do in the bone marrow unit. The day of the transplant is their second birthday. So Happy Birthday AmberLee.

I don’t know if I explained it or not. If I didn’t I do apologize. I’ve had more than 1 person make the comment that they thought it was an invasive surgery. The actual transplant is a very simple process. It is basically a glorified blood transfusion. After her brother Justin was done with his part of it they brought in 2 bags of blood that contained the stem cells, hooked her up and wouila, I think that’s how you spell it. The nurse and the lab tech both stayed in there until it was done, because there are possibilities of reaction. There was no problems at all. It went very smoothly. She is still feeling very good, other than a little back pain this morning.

Now it’s full steam ahead. Everything now is pointing to the discharge day. I asked if she could get out sooner if she did well after the transplant, and they said the discharge date no matter what will stay the same unless there are complications. Then the date will extend. So we’re looking at another month in the hospital.

P.S. You don’t have to give gifts on both days. Don’t tell her I told you.

It has been a much better day for AmberLee today. It was her rest day between her last session of chemo, and her transplant tomorrow. When I called her she was attempting to eat some food, which she hasn’t been able to do for almost a week. She was also feeling better than she has in a while. It is so good to see her feeling better.

Starting tomorrow we are venturing into the unknown. I admit I have been very concerned about the outcome, but time and time again I am hearing stories about people who have survived for very long periods of time after transplants, and it is very comforting to hear the stories. I know everything will work out.

I also want to thank everyone who have visited her. I know how much it helps when someone is there, especially when I can’t be.

It has been a tough week, but she is finally done. Right now AmberLee is on a TPN, nutrients put in right through her veins. She hasn’t been able to keep anything down, and nothing sounds good except fresh salsa, which she can’t have. They finally decided to put her on the TPN to make sure she gets the nutrients she needs.

Tomorrow she starts the chemo to completely kill off the the bone marrow. She’ll have 2 days of that then 1 day to rest and then the transplant. Other than the nausea, and the lack of appetite everything is going as planned.

Everything has gone relatively well with the radiation. It usually takes her an hour to do it. Yesterday she went down at 9:30 and didn’t come back until 11:30. I was starting to get a little worried. When she finally came back the machine that was doing the radiation overheated twice and she had to sit and wait for 45 minutes total for it to cool down. Sounds like they need a new machine. It hasn’t been so horrible though. At least she can bring down some music with her. That makes it pass a little quicker.

It has made it very difficult to eat. She hasn’t been able to keep much down. Both times after she came back she was feeling extremely nauseous and up came her Lunch. The dieticians are starting to get a little concerned about her intake. Hopefully things will get better so she can eat. It doesn’t help that the food isn’t the greatest. Other than the whole nacious thing she has been relatively okay. They are able to give her enough drugs to make it bearable, but they knock her out cold. So the question is do the drugs really help or are they really potent sleeping pills? I guess we’ll never know.

Anyway I’ll keep updating when I know more. Brennan and I are heading down tonight after I get off work and stay the weekend with her. Brennan will be spending the night at Jared’s apartment.

We’re finally here. She was admitted to the hospital yesterday at 9:00 AM. We were able to get a few things up to her room to make it feel more like home. She had been there an hour and a half when they took her down to start the radiation. Brennan and I went to the store while she was gone because we can’t go with her. It was really boring for her. I don’t know if I explained it before but she has to stand on a platform for 15 minutes then she turns around and does it for 15 minutes on the other side to make sure she is cooked evenly.

Finally she got back to the room and they pumped her so full of medication that all she wanted to do was sleep. We all took a little nap and then after a while Jared showed up. All in all it was a pretty uneventful day. I talked to her this morning and she is feeling okay. She hadn’t gone to radiation yet.

We took down a lot of movies, books, crochet stuff. She will have plenty to do. I will get a picture of the room asap. Also if anyone gets up the desire to go visit her. hint hint…. She is in room E851. You get off the elevators on floor # 8, go left then right. Walk all the way up to the nurses station and tell them you’re there to see AmberLee and they will direct you the rest of the way and also please be very aware of how you’re feeling. If you think you even might be a little sick or think you might have been exposed to someone who is sick please don’t go. Wait and go another day, and make sure when you do go that you wash your hands before you go in the room. She will have no immune system and , for example, the common cold could cause serious issues even leading to death. It might sound like I’m beating this into the ground but it is so important and I am very worried about it. Don’t let this scare you into not going. She wants as many visitors as want to come. It’s just a matter of making sure you feel okay before you go.

Thank you all for being so supportive, and we are looking forward to the day that she comes home.

As the title says, it has been a very long weekend. Thursday was our family conference, which was detailed in the last post. AmberLee then stayed with Cour d’Alene on Thursday night, and she and Justin took her to the doctor Friday morning. The first thing she needed to have done was an IV to draw some blood in order to get the Kepivance shot as well as the local anesthesia for the port being placed later that day. It took 4 nurses 7 tries to find a vein! At that point AmberLee was feeling a bit like a pin-cushion. Finally, they were able to get an IV started, and then they sent her down to have her port put in. Time flew by quickly with Justin and Cour d’Alene there to keep her company, but they were still almost two hours behind schedule for putting in the port. The actual procedure didn’t take very long, though, and it’ll be nice to not have to worry about being poked every time they need to draw blood and give medicine. After the port she had to have an X-Ray, and then have her bandages changed. Finally they were done, and I met up with them on their way back to Cour d’Alene’s apartment. AmberLee was exhausted and in a lot of pain. Oxycodone helped, until she decided to have an allergic reaction to it, and was up all night itching.

The rest of the weekend was fun; we stayed Saturday night at a friend’s house out in Heber (thank you Danny and Jamie!), which was very relaxing.

Her last shot of Kepivance was today (Sunday), so we got to come home, and we’ll have Monday completely off to do whatever she wants, her last completely ‘free’ day. Once she’s in the hospital, her days of having restaurant food, or fresh fruit and veggies are over. Everything she eats from that point on has to be cooked all the way through in a very sanitary environment, as she will be prone to infections from bacteria, etc. She’s bummed the most about not being able to eat fresh salsa!

Anyway, that’s where we’re at for now. We’ll let you know how things go on Tuesday once she gets checked in. They did let us know that she can have as many visitors as she wants, but if you’re going to visit, you need to wash your hands thoroughly before you come in her room, and don’t come at all if you think you’re getting sick, if you are sick, or if you’ve been around anyone who is sick. She welcomes anyone at any time, just make sure you come by before 10pm (bedtime!).

Thank you for all of your support and prayers. Those prayers are working so far, so keep ‘em coming! The worst is yet to come! Yeah!

We had the family conference yesterday with Doctor Ford. Everything went well and everybody was able to ask questions about what was going to happen. It is official that Justin is going to be the donor. He will start with giving himself shots on Sunday, and continue that until Tuesday. Wednesday and Thursday he will go into the hospital and have his stem cells extracted. Right after he is done with the extraction AmberLee will receive the transplant.

As you can see we went to dinner afterwards and then to a movie. It was good times, and everyone was in very good spirits. Especially Brennan, but that’s a subject to talk about on the other blog.

Anyways AmberLee is going to be receiving her port today, and all is moving along very quickly.

Again I have updated the calendar.It is pretty much back to the way it was. Since Justin was able to get here so quickly we didn’t have to push anything back. What I have done is from memory. Don’t take it as gospel. A very tentative schedule would be better. As soon as I get the schedule in hand I will make adjustments if necessary. If there are any questions on how to use the calendar please email me and I will explain it in more detail.

Thanks

We just wanted to thank everyone for coming on Saturday. We knew it was short notice and also Easter weekend. It was great to see everyone! We loved having you all over and hopefully we’ll be able to do it again in 4 months.

AmberLee’s Brother Justin is here and has been tested. We are still waiting for the results to know for sure who will be the donor. As of right now he is going to be here until the 17th. If he for sure is the donor then his leave will be extended until the end of the month.

We just found out yesterday that there is a slight difference between AmberLee and Jared as far as compatablilty goes. He can still do it, but because of this they are required to test 1 more person. Which would be Skyler or Justin. Skyler is in Colorado right now working, and Justin is in Florida sitting on his butt waiting for orders. We decided to have Justin be tested because him coming out wouldn’t affect anyone financially. If Skyler did it he would miss a lot of work, and defeat the whole purpose of going to Colorado. We don’t know yet if Insurance will cover the flight yet or not. We’ll find out tomorrow. If Justin ends up being a more perfect match than Jared, he’ll have to fly out 2 different times. First to be tested then to do the actual transplant. Also because of the delay there will probably be another session of chemo to make sure she stays as clean of the cancer as possible before the transplant.

So ignore all the dates and times right now. As soon as we know more I will update again.

We had to be back to the hospital at 7:45 for the PetCt scan. She went in at 8:00 and didn’t come out until 10:30. We won’t know the results until next Friday.

We then saw Dr. Pearl and thankfully he said she wouldn’t need the branchoscopy. Big sigh! The main thing he talked about was her lung capacity. She is at 60%. They expect with the transplant she can lose from 0-15% capacity. The way he put it was, “You’ll lose a little more lung capacity but you will be alive.”

After that we met with the Radiation Therapy department. She is going to be having 30-40 minutes of full body radiation a day for the first 6 days to break down her immune system/ bone marrow. Today they took x-rays to get the exact location of her lungs, and where to put the plates to block them. They are going to be protecting her lungs because, 1-it is the most fragile part of the body as far as radiation goes and 2-Her lungs are already very week from her chemo the first time. Also to make sure they put the blocks for her lungs in the right place everytime they gave her 8 tatoos. They actually look like little blackheads. They place the blocks according to the tatoos. After that we went to see how everything went with Jared’s workup. He had blood drawn, an Echocardiogram, and phyiscal. Everything went really well for him, and we went and got some dinner afterwards.

We are done for now until next Friday, then things get really hectic.

Just so everyone knows, I have updated the calendar with everything up to her transplant. It is still very possible that times and dates could change so don’t take it as gospel but it is the most accurate up to date. Also I haven’t put anything on there about Jared because we don’t know what type of donation he will be giving yet, it all depends on AmberLee’s results, so as soon as we know I will update it with that also.

If you want to know what’s happening on the bold days just click on the date, then click the first link below the calendar and it will give you a detailed description. Any more questions on how the calendar works let me know.

Adam

It’s been a very long day today. We woke up at 6:00 and headed down to LDS Hospital. Her 1st appointment was at 9:00 and it’s a good thing we left early because we got stuck in traffic on the way down. We walked in the hospital at 10 to 9. First we went up to the Bone Marrow Specialist’s office and they drew 18 vials of blood. Luckily AmberLee got someone who was able to get a vein the first time. Then they sent us down for a chest xray. After that we went for an Echocardiogram . Everything went well up to that point. Next was a pulmonary exam. This didn’t go so well. AmberLee had to do a series of inhaling and exhaling exercises. After all the tests a doctor came in and said he was seeing something he didn’t like and wanted her to see Dr. Pearl, Pulmonalogist, before the transplant. He also said he most likely will want to do a branchoscopy, stick a camera down you’re throat and also take samples from your lungs, very unpleasant. After that we went back to the bone marrow clinic. They put us in a room and we waited for the least anticipated part. The bone marrow biopsy. I’m going to post a link that will explain how it works. Needless to say it is very painful.

Bone Marrow Biopsy Info

After that was done we stayed in the room until AmberLee was feeling up to going, and also to make sure she wasn’t still bleeding. After we got to the hotel we both crashed, then we got some dinner and it is now 10:45 and we have to be back at the hospital tomorrow at 7:45 for a petct scan. That’s pretty much everything. I will post again after tomorrow. Also I am going to update the calendar with all the information they gave us today.

Sorry there haven’t been many updates in the last little while. As you can see by the title it has been a little quiet around here. AmberLee does have an appointment today. They have asked us to see a few different doctor’s to make sure everything else is okay with her body before the transplant begins. I promise you all I haven’t been slacking, just nothing to write about. I have been posting about normal everyday stuff on the other blog. I do have to admit though, I haven’t been as good with that blog as I should be.

AmberLee for the most part is feeling well. Her energy is a little low, but that is expected.
I will keep everything up to date when we go to Salt Lake on Wednesday and Thursday. I’m sure there will be a lot to write about then.

Thank you everyone

I was a slacker in getting these pictures uploaded to Jason’s website so I’m doing a new post with the link

Adam and Brennan’s Buzz

Aunt Joan is letting AmberLee use these wigs while she is going through chemo, but I think it looks better on Brennan.

AmberLee’s dad was the most recent addition to the club. I hear Uncle Rick is seriously considering it. If anyone else is interested please email me and we can make the arrangements.

AmberLee was the artist behind this one. She had way too much fun.

AmberLee’s Artwork

I know I mentioned a little bit about what will be happening in the next little while, but we recently got a call from Julie, person scheduling all of the Bone Marrow related stuff, and she gave us a more definite schedule.

First of all on the 20th, she has to go in and get a booster shot to make sure her immune system levels are staying up and that will be pretty much the last thing we do with the cancer clinic.

On March 29th she has an all day adventure where she goes in early in the morning to the Bone Marrow Clinic and has multiple tests done to make sure the cancer is gone. This will include a PetCt Scan, a chest x-ray, an echocardiogram, full pulmonary tests, a bone marrow biopsy(they drill into her hip and extract the bone marrow. Not fun!!), and to top it all off she has to get a spinal tap. I have a feeling she’s going to be a little worn out after the whole ordeal is through.
She will then return home and in 5-7 business days the results will come back. If they come back showing all clear then Jared will go in for his workup. He will have his bone marrow extracted from the hip, and according to the doctor’s it should be a pretty quick recovery. If her results don’t came back clear then they’ll go at it a little differently. He will have to spend a bit more time with specialists. From my understanding, he’ll undergo a series of shots that pushes his stem cells into his blood stream, and then they’ll harvest them over a period of a few days. The whole process would take about 2 weeks for him if we go about it that way. Pray we don’t!!

Once his work-up is complete, it’ll be AmberLee’s turn to go into the hospital. She’ll be there for about 9 days to prep for the transplant, including putting a port into her neck so she doesn’t have to get stuck with a bunch of needles the entire time. They’ll also break down her immune system so she won’t be able to fight Jared’s stem cells when they are given.

After the transplant, if all goes well, she’ll be in the hospital for 6-8 weeks, and then stay in the SLC area for another 8 weeks after that, with constant supervision. And then she’ll get to go home!!!

That’s the whole process in a nut shell. If there are any questions let me know.

Everything went perfectly for her second session of Chemo. She slept through the whole thing without a problem. Thank you for all your prayers. Now that we’re done with the chemo therapy part of it, we now move on to the Bone Marrow Transplant. First AmberLee’s brother Jared will go in and get everything taken care of to donate the bone marrow, and then right after that AmberLee will begin her part of it. We don’t have any dates yet, but as soon as we find out, it will be posted.
Thanks again.

I'm trying a new thing out. I'm doing this all from my cell phone so hopefully it works out okay. They gave her a lot of benadryl before they started the Retuxin, hoping that it will stop any type of reaction. She just started the retuxin and everything is going well so far. More updates will come if anything happens worthy of posting. If not, I will post after everything is done.

AmberLee’s second session of chemo is tomorrow. We are praying for no side effects like she had last time. Please have her in your prayers.

Now isn’t that the image of the perfect family. We had a little too much fun. Tomorrow we are going to get family pics done. I will post the rest of the pictures later, but for now here are a few to wet your whistle.

P.S. Check the more recent post

We have enjoyed doing this blog so much that we decided to make another one, but to devote it to our family. So mostly Brennan. Basically anything to do with what AmberLee is going through will still be here, and everything else will be on our new one. Thanks everyone.

NEW BLOG

This was really interesting! There is a study in Canada that is showing that they might have found the gene that will tell doctor’s if a donor’s bone marrow will be rejected even before the transplant! According to the article it would become a standard test before a donor is considered. This could also work with the transplants of other organ’s also!

ARTICLE

I was reading some articles this morning, and I found one that explains the process of the Bone Marrow Transplant for NHL patients which AmberLee will be going through. If you do read this, AmberLee has the Low Grade Lymphoma. It was a very good article and it explains it well. Any questions after reading this leave a comment.

ARTICLE

On the lighter side of things. We were watching the Jazz game last night and Brennan was getting into the game way too much! If your wondering where he got it from. Well, you should see AmberLee. -video

This is probably more directed to parents, but if anyone else would like to post something they’re welcome to. Just let me know and I’ll add you to the list, and you can post.

Just an update on the shaved head pictures. I bic’d it tonight. She looks so hot with her head shaved. She’s such a good sport for letting me upload these pics. Oh wait. She doesn’t know. Oh well, better to ask for forgiveness than permission.

Until later

PICTURES

If you want to leave a comment on a post, I just changed the settings so now you don’t have to sign up to do it. You can just select other, put who it’s from then if it’s a question i will know who to respond to. I don’t know about anyone else but I hate to sign up for stuff like that just to leave a comment. So just an FYI. I will receive an email if a comment is left so if it is a question i will respond quickly.

On Wednesday of last week AmberLee pulled out a chunk of hair. I know it’s backwards. I’m the one who’s suppose to be losing the hair right. Then after that she wasn’t able to pull any out until this morning. After church her scalp started to tingle and she was pulling out hair by the chunks. Kevin, AmberLee’s Dad, had already volunteered his services to shave her head when it started falling out. We called him and they made a special trip to come down Sunday night to shave it off. There might be a post soon with my hair shaved also, but if AmberLee has her way it won’t happen. I want to do a family portrait with everyone shaved. To be continued.

PICTURES

After AmberLee’s last session of Chemo the first time around, and after Brennan was born (2004) she had her Stem Cells stored for a future bone marrow transplant, which from what they told us then would be done this time around. Now that we’ve come to that point we have been meeting with them, and we have been given 2 options on what we can do. First of all we can do the transplant with her stem cells that were stored last time, or we can do it with a donor. There are Pro’s and Con’s for both. With her own stem cells there would be no danger of rejection of the cells, and she would have a complete recovery, but the down side is all it will do is prolong the amount of time until her cancer returns by maybe a couple years. If we go with donor the upside of it is that it is a possible cure. The down side is that there is a 10-15% mortality rate and a 35% chance she can get a disease that’s called grafter’s vs. host. When we were first told about this, we were told it would be something she has for the rest of her life. Eventually it would shut down her organ’s and, as the doctor put it, she would not live to be an old woman. This made it a very difficult decision for us to make.
When we met with the bone marrow specialist, Dr. Finn Petersen from Finland, he corrected the other doctor and said that it was very curable if she got the Grafter’s vs. Host. It is long term but curable within a year and a half tops with constant treatment. This made a hard decision an easy one. We decided the Grafter’s vs. Host was a much better alternative to not curing the cancer with the transplant with her own cells. Yes it would definitely be hard, but now we know it’s not permanent. We have had all 3 of her brothers tested to see if they could be donor’s and all are perfect matches! That is very rare that all 3 siblings are matches. They were hoping for at least one. AmberLee’s brother Jared will be doing the transplant. We are so grateful to him for being willing to do this. We love you Jared. We also know that Skyler and Justin would do it too without a second thought. The prep for the transplant will start as soon as AmberLee is done with her 2nd session of chemo. She will have to spend 4 months total down in Salt Lake. 6-8 weeks in the hospital, and 2 months after living close to the hospital for monitoring. I will be staying In Tremonton while she’s down there. I am working 2 jobs and going to school right now. Brennan and I will be driving down on weekends to stay with her. She is very open to having visitors, hint, hint…

You’re probably going to get sick of me saying this but get used to it. Thank you for all your prayers and support.

Just to get everyone up to date. AmberLee was diagnosed with Cancer for the second time in mid January. She had her first session of Chemo on the 23rd of February. It was hard going. She had a severe reaction to the Retuxin, don’t ask me to tell you what the medicine does. She had severe stomach cramps that lasted for a good half hour. The doctor sent me to the pharmacy for morphine. After she got it, about ten minutes later the cramps went away and she was able to finish the retuxin that day, but not the rest of the medicines so she had to return the following tuesday to finish the regimen. Following the chemo she had a rough week including chest pains that were a concern to the doctor so they did a ct scan but nothing except for enflamed muscles under the rib cage from the chemo. We are in very high spirits. Everything is going as well as can be expected. The next session will be March 13th.

AmberLee’s dad gave us an idea to start a web page for anyone who wants to know what’s going on with AmberLee and her Chemo/Bone Marrow Transplant. I will do my best to keep it updated. If it isn’t updated for a long time, email me and I’ll update. Thanks for all your support and if there are any questions that I haven’t answered on the blog, either email me or call me.

Adam, AmberLee and Brennan