Sunday, November 30, 2008

Just a cute picture

Thursday, November 27, 2008

Thanksgiving at the hospital. Emm had grilled cheese for dinner. She held most of it down. Kara is in her PJ's cause she stayed the night.

Tuesday, November 25, 2008

Tree for Emmalee that will go into the Festival of Trees. Please support the Festival.

Wednesday, November 19, 2008

Today a therapy dog came in to see Emm. It really lifted her spirits. 11/19/08

Tuesday, November 18, 2008

11/18/08 Ready to go!

11/18/08 Leaving to go back to the hospital
TUESDAY, NOVEMBER 18, 2008 03:03 PM, CST
We just arrived back at the hospital a couple of hours ago. They will start her chemo tonight at about 7pm. She will get both chemos tonight. One right after the other. One is the most powerful chemo and the chemo that causes to most severe vomiting and naseau. They have to get her up every two hours to urinate cause the chemo will do damage to the bladder if it sits in there.
They will do more chemo tomorrow and hopefully we will hear back from the insurance on whether or not the experimental medicine will be covered.
We were very touched by the story that KSL did on Emmalee's class mates who have shown how much they love, support and care for Emmalee. It is very clear that all of her friends want her better and will do whatever it takes to help her.
We want to thank all those at the school who organized this caring effort and called KSL to alert them of the significant care and compassion that was being shown toward Emmalee. It is truly amazing!
Emm is still a little worried about her hair loss and how she looks. Sometimes she just doesn't want to be seem by anyone and other times she is ok as long as she has a hat on.
Thanks again to everyone for so much love and support. Please pray fervently that this round of chemo will be successful and less traumatic on her body.

MONDAY, NOVEMBER 17, 2008 05:18 PM, CST
Some of the boys in Emmalee's third grade class shaved their head today to support Emmalee. KSL TV heard about it and is going to do a story tonight at 6:00pm.
We are heading into the hospital tomorrow at 1:30pm to admit her for another round of chemo.
Some other pictures are posted on the love4emmalee site.

There are very few children in the world that are diagnosed with the type of cancer she has. Most adults who have this type of cancer get it because they have developed cirrhosis of the liver or have Hepatitis B. Emmalee has neither. They have no idea why or how children get this cancer.
We took Emmalee to Kara's brothers house where we celebrated Kara's mom's birthday. Krystal and I went to Target and bought Emmalee an outfit to wear. Emmalee saw what Kyrstal was wearing and wanted to look like her. She had a Down vest on with a long sleeve shirt.
Emmalee did really well for the first 10 minutes. She then got tired and had to go lay down. It was good to get her out and she seemed to enjoy seeing her cousins.

FRIDAY, NOVEMBER 14, 2008 04:51 PM, CST
We read Emmalee a lot of the notes on this website, cards and letters yesterday. It makes her feel good that so many people care. She even got emotional hearing some of the comments people have left for her. She misses so many of you and wants so badly to get back to normal. There are times when she feels good and seems back to normal, but those times are few and far between. She does not want to hear any talk about having to go back to the hospital on Tuesday. However, this morning she was in quit a bit of pain and asked to go back to the hospital. Thank goodness for medication that helps her get through these times. The love and support of everyone helps us get through.

Sunday, November 16, 2008

Kara, grandma and Emm

Aunt Mindy just gave her some gifts. She got a smile out of her.

She is starting to get a little irritable.

Emmalee was craving chips and salsa. She ate and then 10 minutes later she was wiped out and had to go lay down.

Thursday, November 13, 2008

Matt without hair and Emmalee with hair.

She is home! This is her sisters crazy hair hat.

Emmalee coming home on 11/12/08.

Saturday, November 08, 2008

Another view of her sleeping with her eyes open. You can see two of her hats in the upper right. She loves the pink one.
11/8/08. She is finally asleep for a few minutes. She sleeps with her eyes partially open. She has had a lot of belly pain today and is still on some heavy pain meds
Krystal and I took her outside (against her will) to the wishing pond. We were letting her throw some pennies in the pond. We had to drag that big cart with her.
Kara stayed the night last night and it was a rough one. Her tests are all showing that she is doing well but she is still in pain. She has been on Morphine like pain meds most of the day today. Something just doesn't seem to be right.

Krystal and I went out and bought her a bunch of hats today. She said she wanted some "crazy" hats, but we couldn't find any. It may be setting in that she has cancer because her hair is gone. She looked in the mirror last night and screamed "I am bald" This was really sad. She did not want her brother to even see her last night. We keep telling her she is beautiful. The picture is of her today in one of her hats.


FRIDAY, NOVEMBER 07, 2008 08:59 PM, CST
The catheter was taken out today and so the only tube she is connected to right now is her central line in her chest where they are feeding her, giving her meds, and drawing blood. Her ammonia level is now normal and her white count is coming up. This basically means she is getting better just in time to start looking at another round of chemo that will again knock her down. We want to be so careful this time so that she does not end up with another infection and back in the hospital between chemos. She will stay in the hospital at least until Monday. She was scheduled for another round of chemo on 10/11. I hope they postpone it at least for another few days so we can get her home and enjoy her feeling good for a few days.

She is feeling better each day, but is still cranky and irritable at times throughout the day. She still complains of being so hungry, but wont drink much. She has graduated to being able to have jello and broth. Just tonight she ate a little jello but refused the broth.

A blog was developed for her by one of her aunts. Caringbridge only allows for a minimal number of photos. So we are going to try to add more photos to this blog over time.

It is


Last night Kara's mom asked Emmalee what she has learned from all this. Emmalee responded "I Know that God loves me and everyone else loves me to"


It is 8pm and Emmalee's cousin who is in cosmetology school came up and cut of most of Emmalee's hair. It has been falling out fairly quickly now and has been itchy to her. I think she looks great! Emmalee is asleep right now so she hasn't seen it yet but knew what we were doing. We had prepared her for this and she was ok with it.

Today was up and down according to the nurses. Kara and I had to work today so we had my parents and a sister in the ward up at the hospital. Everyone has been so willing to help and we are so appreciative. Overall, I think she is better today. She is still not drinking very much, but she keeps saying how hungry she is. She started having bowel sounds today so that is good.
She did not want to get up at first. She just wanted to lay there. It was a beautiful day. This is about 4pm on 11/8/08

Wednesday, November 05, 2008

Past Journal Entries

TUESDAY, NOVEMBER 04, 2008 08:14 PM, CST
Wow! We finally found out what happened in surgery. (At 3am communication just is not very effective.) In order to have air in your abdomen there has to be a hole some where. There was no hole that they could detect in her intestine, but at one point there had to be a hole and they think that it may have closed on its own. They took all of her intestines out of her body and checked them. They were swollen and infected. Since they were in there they decided to take out her appendix. They also noticed that her colon was swollen. This type of infection happens at times to people on chemo when their white count is down. Emmalee will be so prone to infections going forward.

We also learned that chemo will continue when she has recovered from surgery and her white count is up. It could take anywhere from a few more days to a few weeks. Going forward they will not use the chemo that they think may have caused the hole in her intestine. There is a new drug they may try with her as well.

Today Emmalee has been in so much pain that she has just cried and moaned most of the day. It just seemed like the pain medication was not keeping up with her pain. They finally gave her a dose a Ativan along with the Morphine and it did the trick. She finally relaxed and fell asleep for 2 hours. She woke up at about 4 or 5 pm and had to go to they bathroom but still cant get up to go. We just keep telling her to go and she had gone in a bed pan earlier in the day. However, she hates that. They used a ultra sound to look at her bladder and discovered that she had about 1 liter of urine in there. They were scrambling to get a catheter but she was able to pea about half of it out into a bedpan. Then they finally go the catheter in and she go the rest out. I guess pain meds can cause you to retain urine and make it difficult to go.

Now at 8:40pm she is relaxed and asleep. However, I just learned that we need to take her down to get another X-ray of her abdomen. They want a baseline to see if the air is leaving.

Hopefully, tomorrow we will see some improvement.


MONDAY, NOVEMBER 03, 2008 09:06 PM, CST
This was just another one of those horrible days where we felt inadequate, useless and unable to provide comfort. She got out of surgery at 3am and did not have enough pain medication to take the pain away. She was extremely thirsty prior to her operation this morning (but could not drink as it would cause problems with the surgery) she woke up from the surgery very thirsty, but they would not let her drink and still wont let her drink. She cried because of pain, thirsty and needing to go to the bathroom. They assured me for 6 hours that they catheter was working, but it wasn't. Emmalee kept begging me to carry her to the bathroom. She cried over and over that she had to go. She did not want to wet the bed. I put towels under her and told her to just go. She continued to refuse. The nurses and doctors told me and her that it was just a sensation she was having and not to worry about it. Six hours later she finally just let go and wet through 3 bath towels. I was so mad and let them know how upset I was. She also continued in pain and finally in the afternoon got her own pump to help control her pain level.

We have received so much conflicting information today we don't know what is right. I was told last night that chemo may not be an option anymore because of the potential it would create more holes, but now we are hearing certain chemos might still be ok. I was told a hole was repaired in her large intestine, Kara was told this afternoon there was no hole. We do know that she needs to heal from this surgery before we look at next steps.

It was so difficult not being able to help or comfort her and hear her cry for a drink. I felt like I was lying to her by saying that the cathiter was taking taking helping her and it wasn't.

Today was very stressful, but we are thankful for all the support and help, in the variety of ways, we are receiving.


MONDAY, NOVEMBER 03, 2008 05:53 AM, CST
Emmalee had emergency surgery this morning at 2:00. She had a hole in her large intestine where air was seeping out and causing her to have the severe abdominal pain. They went in and opened her up to repair the hole and were successful. However, The chemo therapy some how caused this hole and there is risk that more holes will be caused by chemo


SUNDAY, NOVEMBER 02, 2008 06:50 PM, CST
We had another rough night. Emmalee had stomach cramps most of the night and a couple of bloody noses. She continued to have stomach cramps today and slight bloody noses (mainly in the nostril that her NJ tube is in). Steve checked her temperature around 4:30 today and it was 101.4 deg. I called the on-call Oncologist and he suggested that we admit her. Before we left we checked her temp. again and it was 102. We are in PCMC again and anticipate a 48 hr. stay. Emmalee has been mostly asleep since her fever came on. Her ammonia levels have gone down, however, so have her blood counts. We need to be extra careful that she doesn't get sick. Several blood tests are being done right now to find out if she has an infection. Most likely she does and they will find out where it is. They already have her on an antibiotic just in case. We'll write more as we find out exactly what her status is. Thanks again for all your prayers and kind messages. We have all enjoyed reading them to Emmalee.



Emmalee had a little better day today with off and on pain and nausea. She has a difficult time with certain noises at certain times. Some times it bothers her to hear people talking or even the TV bothers her. Kara and I got some sleep last night because Matt stayed up with her and helped her. We are so grateful for all the prayers, dinners, offers for help and the kindness of everyone. This is still very shocking and overwhelming. We just can not believe that Emmalee has to suffer this. She asked her mom why this is happening to her. That is just a tough question with no easy answer for an eight year old

FRIDAY, OCTOBER 31, 2008 06:17 PM, CDT
Emmalee had a really tough night. The medicines we put in the NG tube make her nausiated. She has about 9 meds that need to be given. It is a little much for her. Some of the meds we crush up, add water, put in a syringe and then add in feeding tube. She said she doesn't want any trick or treaters coming by cause the noise would bother her. Please continue to pray for her.


THURSDAY, OCTOBER 30, 2008 09:05 PM, CDT
Emmalee just arrived home at about 8:00 this evening. We are glad to have her home and she seems more comfortable at home. We have the home health nurse coming back to teach us how to feed her and give her medication through her NG tube. (It goes from her nose to her small intestine)We left the hospital today with about 10 perscriptions which she needs various meds around the clock. She can not have any food that has protein, which pretty much eliminates all foods. That is why she has the NG tube and a special dietary formula.

She had one dose of chemo before she left the hospital today, another out patient dose on November 5 and will go back in-patient for another 3-5 day round of chemo on November 11.

It is a little overwhelming right now.


Emmalee is almost back to normal functioning. She is still week and being feed by a tube but she is interacting and even a little feisty. She has also smiled a couple of times today. What a huge relief! We are grateful for the prayers for her. We have told her that her name is in many temples and a huge number of people are praying for her. We are mostly to Heavenly Father for hearing our prayers and the angels that are watching over her. We all really believe that and her blessings have confirmed that angels will be here for her. Emmalee is a fighter and we are right beside her battling against this horrible disease.

She is doing so well that they may even consider to have her come home tomorrow. We are so excited for this. Emmalee just want to be home in her own bed.


TUESDAY, OCTOBER 28, 2008 08:02 PM, CDT
Emmalee woke up today!!! It has been since Friday afternoon that she has basically been confused irritable and unresponsive. This morning she started responding to questions and talking. She has still been throwing up and they continue to give her medicine for this. It was very exciting to see her talking and responding this morning. At the same time it is very draining for all of us and mostly for Emmalee. She is still weak and sleepy. I believe it is partly because she has not had any nutrition in her body since last Thursday. The chemo made her lose her appetite. Her ammonia level actually went up today but she came back to us anyway. When they started feeding her that is when she came back to us. We just want to get her home!!!


MONDAY, OCTOBER 27, 2008 08:01 PM, MDT
At 3:30 today they started giving Emmalee nutrition in her feeding tube. She didn't like it and kept trying to pull the tube out so they tried again at 5. I feel better knowing that she is getting some kind of food in her. Sugar water can only go so far. The nurse said Emmalee keeps calling for me. I'm glad to be here with her now. I worked today and it was hard being away from her. She is a little more coherent tonight. Steve said they still changed quite a few diapers today so that's a good sign she's getting more ammonia out of her system. Steve is staying another night here so that I can continue working. My boss has been so nice and understanding. Steve and I were away from work all last week taking care of Emmalee and now Steve is doing most of the work as he was able to go on FMLA and use some of his sick leave. I haven't been at my job long enough to qualify but we will do our best to coordinate our schedules for Emmalee. It's been a crazy year for us. I missed a lot of work when I first started my job with Altius because of the flu, etc. and had to use most of my time off. I used a lot last week so I will try to ration what's left. I hope we get Emmalee back soon. It's hard to not be able to talk to her and hold her. She has responded to a few things I've said tonight so Steve and I are crossing our fingers that she will "come to" by morning. Once we get her home she will be much happier. I have to thank everyone again for all your kind thoughts, words and prayers. Everyone is so generous and we are overwhelmed by all that you do. We love you and know you haven't given up.



SUNDAY, OCTOBER 26, 2008 04:29 PM, CDT
Emmalee's ammonia levels are still high. They are giving her medicine to help her have bowel movements. Apparently the ammonia has to come out of her this way and not through her urine. She has been working at getting this out of her.

Just this afternoon she woke up enough to tell Kara that she wanted to go home. This was good but heartbreaking. She is just not well enough to come home yet. We hope over the next several days she can get home.



SATURDAY, OCTOBER 25, 2008 12:59 PM, CDT
Emmalee had a very rough night. She was agitated, in pain, whining, moaning and confused most of the night. They could not figure out what was wrong. At about 9am they did a test on the amount of ammonia in her body. It was very high. Her liver is unable to break this substance down right now. They had to put a feeding tube down her to start some medicine that could break down the ammonia.

I could not watch because a couple of nights ago they put a tube from her nose to her stomach and I had to help hold her down while she screamed that she couldn't breath and she was drowning. She got a bloody nose during this process and that just complicated things. It is so hard to watch her while she is in pain.

She is resting at the moment, but it will be days before we can get this problem corrected. Sounds like it may be a long term problem. Needless to say she will remain in the hospital for a few more days at least.

Please continue to pray for her.



FRIDAY, OCTOBER 24, 2008 07:22 PM, CDT
Thank you all for your thoughts, prayers visits and those who came over to help clean and sterilize Emmalee's room and other areas of the house

We had some great news today. Emmalee had a bone scan to determine if the cancer had spread into her bones. It showed one trouble spot inside her right shoulder, so a follow up x-ray was done to take a closer look. It confirmed that the cancer has NOT spread into her bones. That is awesome news!!!

She also had a ultra sound today and no problems were reported with that. They were looking to see if there was any blood or fluid in her belly.

It is too early to tell if the Chemo therapy is working. They will do another CT scan in a few months to assess its effectiveness.



FRIDAY, OCTOBER 24, 2008 07:12 PM, CDT
One of the questions that is asked frequently is how did we discover the cancer. On Wednesday October 15th Emmalee's sister Krystal was playing with her and Krystal's hand just barely touched her stomach right below her sternum. Emmalee started crying cause it hurt so badly. Matt (her brother) and Krystal lifted up her shirt and noticed a distension right below her rib cage. They thought she was tightening her belly and told her to relax her stomach muscles. She wasn't able to so they told mom. (Emmalee was at her grandmas the day before and was fine and she even went to Lagoon with her sister that same day). We watched her over night and continued to check her and when we felt her upper abdomen (where the distension was) it continued to be tight and very painful even to the slightest touch. We took her to the family doctor the next afternoon who referred us to PCMC for evaluation. That is when Kara and I received the horrible news that she had a tumor that had infiltrated her entire liver. She had a biopsy on Saturday 10/18 and then the final diagnosis came on Wednesday 10/22.


THURSDAY, OCTOBER 23, 2008 12:30 PM, CDT
This CaringBridge site was created just recently. Please visit again soon for a journal update.

THURSDAY, OCTOBER 23, 2008 11:31 AM, MDT
Thank you for your love, concern and interest for Emmalee. As you know, she is an amazing and beautiful girl, full of life and spirit. We truly love her!
I have been asked by the Havertz family to post the most current information about Emmalee's condition. The family is so appreciative of all of your outpouring of love and support! Your prayers, visits, cards, gifts, meals...everything has meant so much. Please continue to exercise faith in their behalf and to keep them in your prayers! They ask that we continue to be full of hope and faith!
Emmalee was officially diagnosed on Wednesday with "fibrolamellar hepatocellular carcinoma with portal vein involvement" and is consider to be at a stage III.
This is a serious cancer of the liver. The positive aspects are that it is the slower growing form of this type of cancer and it has not spread to her lungs. It is unusual for a child to be diagnosed with hepatocellular carcinoma, as it typically affects older individuals. Because there is not a large group of children affected, the outcome is uncertain. Children often respond differently to situations and procedures than adults and it is important to stay positive.
Yesterday, the family learned that the growth has spread to the portal vein. There is one lymph node that has been identified as being swollen and most likely affected as well. Because of these two issues, for now, Emmalee is no longer considered to be a candidate for a liver transplant.
On Tuesday evening, Emmalee began chemotherapy. A central line has been put in place through which the chemo will be administered. She will spend three to five days with inpatient chemo and then receive additional outpatient chemo in between a three-week cycle.
One expected side effect is that Emmalee will lose her hair. She will also experience nausea and sickness. Her white blood count will also be compromised. During this time she needs to be especially careful to stay as healthy as possible. Your visits are appreciated, but please be especially sensitive and not visit if you are sick or have been exposed by family, school, work (or elsewhere) to any illness.
While statistically this is a difficult cancer to fight, we are not giving up hope! Emmalee has a strong spirit and is fighting very hard. The medical community is doing all that they can to best treat Emmalee. It is our job to ask for the Lord's help.
Please pray for Emmalee, Steve, Kara, Matthew and Krystal. The family asks that we specifically seek for an understanding of God's will, the ability to exercise enough faith to see a miracle, and that doctors can be inspired to best treat Emmalee.
Again, thank you for all of your love and concern. Your efforts are greatly appreciated.
With love,
Christy Wagstaff (544-3356)