Jaimee Makes The Paper

Logan, Utah's Herald Journal has an article about Jaimee's run with Team Tumor.

The first picture is just as she finished her very hard 1st leg. The 2nd is Jaimee and Sherri mid-run half way through the 1st leg.

These pictures Were printed in the paper. Let me say, we are all proud of her, as well as the other members of her team!

Marathon Woman

Jaimee started the marathon this morning. It's been a long road.

The iron transfusions have been tough. She had a PICC line placed a couple of days before the first infusion of June 9th. It's caused some problems but she's dealing. The infusions themselves have been hard. She was really sick, dizzy, everything in her body ached, stuff like that. The dr. said it is hard on her body and organs because they were so depleted. On the 9th he told her she shouldn't run the marathon and gave her a note to that effect.

She did her 2nd infusion on the 16th, two days ago. While it's been hard and she hasn't felt well, it hasn't been as hard as the first one. Hopefully the last one next week will be easier. AND she can get the PICC line out on Wed. This week, after she explained to the dr. how careful she would be at the marathon (walk instead of run if need be, stop if she feels too bad) he gave her a note that said she could participate. The note made it so the support van would stay close to her so if a problem arose she could stop immediately.

That being said......Sue drove her up early this morning so she could get a night's sleep in her own bed. She was in Logan by 8:30 am or so. She ran and walked her first leg which was 6.7 miles. It was really, really hard but she shed tears of joy after completing it. She said her teammates were awesome and so encouraging. And it was so hard she didn't think she could do it. But she made it! After her whole life of battling asthma, 2 rounds of chemo and all else, today our Jaim is a marathon runner. (The picture above was taken after her first must difficult run, meaning...she survived! :))

We know her health problems are not anywhere near as tough as some of those of her dear, dear friends. They have been such an inspriation for her and I'm sure she has been for some of them as well.

She runs her next leg at 9:30 pm tonight. It's only 3 miles long. The 3rd leg is 3.3 miles and I don't know how long the last one is. The marathon will end at 9:30 tomorrow night!

Go Jaimee Go!

Fred's Dead!

Good news everyone. Fred is Dead! Gone. Zip. Nada. Jaim will be on antibiotics for a couple of more weeks to make sure that bugger stays away, but right now he is history.

AND, the tumor didn't grow any more. We'll take that, although it does need to shrink.

Just one more hurdle in the foreseeable future and that is the iron transfusion. It ends up being a nightmare for Jaimee because of her veins, but she is going to request a PICC line (you know it's bad when Jaimee would rather have a PICC line than what happened the last time). The other possibility is (I think) a mid-line. It still needs an xray machine to use when putting it in, but it isn't as invasive as the PICC line. We also have to watch carefully for signs of her being allergic to the transfusion (as happened before). But let's keep our fingers crossed.

Dare we hope Jaimee can have a break on things medical for a minute?

A Bump in the Road

We guess things just can't go smooth. Anyone out there have a smooth-running life?

Jaimee's "non-smooth" life seems to keep on bumping along. She has started having some symptoms related to the tumor. As long as the tumor is asymptomatic there is nothing that needs to be done to get rid of the bugger. But when the symptoms come, then we need to look at options again. Options may be discussed after her next scan.

A problem unrelated to the tumor has cropped up this week. Long story short, after a really frightening episode this week the doctor told Jaimee she has a dangerously low level of iron in her blood. So she'll be getting an iron transfusion. This isn't the same for her as a problem-free blood transfusion, in fact it's going to be pretty yukky. But hopefully it will help the things that have been going on.

AND...two weeks until the marathon. Even if all she can do is walk, she's going to do it. What a test of will this is, not just for her but for all the participants who are helping to raise awareness and funds to aid the American Cancer Society in their fight against this deadly, crummy disease.

Run Jaimee Run

It's been a while, so I'll catch everyone up.

Jaimee had a scan Monday (the 10th) and it shows the abscess is almost gone. The dr. says he thinks in another month it'll be totally gone. Yahoo!

On a worse note, the tumor has grown a little bit. We don't like that one bit, but right now the dr. just wants to watch and see what it does. Jaim can wait a month for the next scan, so it's just watch and wait until then. She's been having some symptoms like she had when the tumor was first discovered, but not as many as before. Not good news but she's handling it.

AND, Jaimee has joined Team Tumor through the American Cancer Society. She has some wonderful friends from work who have and are battling cancer, and they invited her to participate. (Side note: These have been the most amazing friends and we are so grateful for them.) She's kind of nervous because the asthma makes running harder, but she's giving it a good shot. So far she's been training really well, has had some ups and downs, but she's doing it. We (I) figure she might get sick afterward, but it has been the most wonderful mental boost for her so we all support her. We are really proud of her. This marathon is a 24-hr. marathon and they run "legs," so she won't be running straight through but run 4-8 miles or so, then rest, maybe sleep some, and get ready for their next leg. This maraton is in June, so we'll let you know how it went.

Update

In the last 2 weeks Fred has not made any moves to leave. He isn't growing but he's not leaving. So Jaimee is now on 2 antibiotics (instead of just 1 that she's been on), an extra anti-seizure medicine to see if it helps (she had an event last weekend) and some other stuff. She is generally doing OK, just really tired of the time it takes to do what the doctor wants--not to mention the money.

Will this ever end?

Drop Dead Fred!

Well, the scan this week showed Fred is sitting there just as he always does. He isn't leaving but he hasn't decided to grow, either. Meanwhile, Jaimee and Raheem are getting a well-deserved two nights away. Just think, they can both sleep all night (unless they lay awake worrying about the kiddos back home). Next week, it's back to the doctor to see what he wants to do in the never-ending quest to get Fred to DROP DEAD!

Holding Her Own

Just a brief update. Jaimee is holding her own right now, has some good days and some bad days. But the bad days are never as bad as some (or all) of the previous bad days. Since there was no scan this week we don't know what Fred is doing. Hopefully he's realizing there is no love for him here and he's getting out of "town."

Is That a Light at the End of the Tunnel We See?

Jaimee got the results of yesterday's brain scan and there is some light at the end of the tunnel...we think. It seems that the doctor says Fred has been significantly affected by the treatments (altho from looking at the scans Jaimee can't see much difference). So the doctor is happy with cutting the antibiotics down to one kind instead of the 3 kinds she's been on. This should help with the side effects she's been having, hopefully her body will tolerate it better. She also gets to cut down on the prednisone some, but still takes the rest of the meds.

Another piece of good news is she doesn't have to have a brain scan next Monday. Since she has to pay $350 out of pocket each Monday, it has been a problem. But at least she won't have to have one next week. If she goes two weeks without a seizure or any other Fred-related problem, they'll re-evaluate everything.

Dare we hope this could continue to improve? She will have to stay on antibiotics for at least some months, but if the dosage is a tolerable level she shouldn't have any side effects. And if Fred is slowly disappearing, it seems he'll drop dead at some point (hopefully in the not-too-distant future).

A Diffiult Week

This is Ann reporting in. If you've been checking the blog in the last week, you may have thought things are going well. When we left it over a week ago, Jaimee was taking oral antibiotics, and had done well for the first couple of days. The primary bloggers (Mike and Kenna) have apparently been busy and not able to update the blog. I asked for permission to add to the blog and get everyone up to date.

The good news of a week ago Thursday, didn't even last through the day. I noticed into by the end of the day Thursday, that Jaimee was starting to have stomach problems. She is and always has been a trouper, and continued throughout Thursday to try and ignore the pain. By Friday, she was laying down more often than she was up and about, as the pain had increasingly worsened with each day. Jaimee's not a person who likes to lay down. It was clear to me that the pain was getting pretty bad.

On Saturday, she was supposed to work a 10 hour shift. She was feeling terrible, but persisted in heading out to work. She was suffering a killer headache on top of the pain from the strong dosage of oral antibiotics. On the way to work, she ended up throwing up all over herself. thereby losing all of her medicines in that manner. She had to turn around and come back home, spending the rest of the day basically in bed.

It only got worse from there. Among the medicines she threw up was her seizure medicine. That ended up causing problems for her. All of a sudden, about mid-afternoon; she was wobbly and unable to walk. Her mother and I were trying to help her move from one location to another in the house; using her office secretary chair to wheel her, as a "pretend" wheelchair. It was difficult moving her from the "pretend" wheelchair to the couch. Jaimee is strong stuff. Through all these months, the two rounds of chemo, pain, and everything she's been though, I've NEVER seen her cry. As she collapsed in an awkward angled position on the couch, not yet able to put her body into a position of either sitting or laying down; I saw the tears come. It did truly break my heart. I know she had to be scared and literally at her rope's end. When I told her later that this was the first time I have seen her cry through this long ordeal, she stated that she is usually able to hold the tears until she's alone. I hurt for her in those lone times.

Anyhow, during this time that she was struggling and we were trying to help her move, she kept saying, "My tongue feels like it's too big for my mouth." I couldn't figure why she was all of a sudden so unable to move her body or function. Nor did I have a clue why the issues with her tongue. We found out much later, that she had probably had a petite mal seizure. There were several other symptoms that I can't remember, going on along with the inability to move her own body in a normal manner, and the feeling of a swollen tongue. As she named them off to her doctor at her next appointment, he said they fit with having had a seizure. That definitely wasn't something she needed on top of everything else that day.

At the beginning of the work week, she had what by now is a weekly CT scan. The doctor found the abscess has shrunk some but not near enough. She needed a lot more of the high dosages of antibiotics fed into her system somehow. Her veins blow and it's not successful to put the medicine in by IV anymore. The decision was made to put a PICC line in. This is something that Jaimee has fought against since it was first suggested.

A PICC line is where they put a tube into your vein, and shove it all the way up your arm, through your shoulder, then angled into an area in your chest. The tube is left there, and medicine can be fed into the body that way. Picc lines, for those that don't know; have been used to feed people who are unable to eat by mouth for whatever reason. Wednesday morning Jaimee had a 7:45 a.m appointment at the hospital. They took her to a surgical suite and snaked the tubes through her veins into her chest all the while she was awake and had no pain killer. The only thing they did is numb her arm, where the tube went in. This was a very traumatic procedure she had to endure. She went through it alone, and had to stay at the hospital for tests and ultrasounds and everything else the doctor required for the entire day. She didn't get home until around 6:00 p.m. from all this trauma and ordeal. I didn't know she was getting a Picc line until it was all over. Once I realized how traumatic this is; I feel really bad that she had to endure it alone without any of us there to help "hold her hand" through this.

Ever since they put the Picc line in, the arm had been burning and hurting. When she lifted her baby up; it's very painful and difficult. Friday morning, she woke up with her hand (on the arm with the picc line) swollen and white, and with some numbness. In addition to that, there was a lot more burning happening and even more pain in her arm. In addition to the pain and burning in her arm, there was also now pain in the shoulder. There was discomfort in the shoulder previously, but then it became painful. She called her doctor. They told her to rush in right then. They did an ultrasound and found that the pain in the shoulder was where the line was crossing over a nerve. On top of that, they saw a blood clot was forming there. They stopped immediately what they were doing. They had to pull the Picc line out. It's upsetting that she went though all that trauma to get the line put in; to only have to pull it out without getting the benefit of all this. Once again, fully awake, she had to endure the this procedure without benefit of some type of deadening agent/anesthesia/pain killers or something!

So here we are again. We need those antibiotics fed in. It's imperative she get them. IVs aren't working for her, the Picc had to be pulled. She's going to try once again to take them orally. From what happened the last time she tried, I don't think that's going to last more than a couple of days, before she's in bed with abdominal pain again. With all the pain Fred's presence in her head causes, she doesn't need more! Where we are going from here, or what happens next; I have no idea. Please everyone join with me in telling Fred, the unlovely abscess to PLEASE drop dead and leave Jaimee alone. Tonight as she as she snuggled with her daughter (picture above) she said, "THIS is the best medicine I could ever have". Wish we could bottle some of that and eliminate Fred once and for all!

So Far So Good....

Jaimee has been able to tolerate the oral doses of medicines the doctor has put her on. It hasn't been a pleasant experience, but I think she would say it isn't as bad as the chemo was. She says no matter what, as long as she doesn't throw the meds up, she's staying on them at least until next Monday when the next brain scan is. (If anyone could stay on them, it would be Jaimee. She really is tough...not that she feels good but she just braves her way through it.) If Fred cooperates, she can go on lower doses of meds. If not, hopefully if she does have to have a PICC line her "go to" vein will have recovered enough that they'll be able to find it for the line.

Bad Veins, Brain Scans & Fred

Yesterday Jaimee had her weekly brain scan, which turned out to be a horrible experience.

When they do her scans, they have to inject this dye into her veins. Well, Jaimee's veins are bad to begin with, and they are weakened from all the medication she has been on. It was getting close to the end of the scan and Jaimee's vein blew. She told the nurse but by the time they could have gotten in there to take the IV out, the scan would have been over. So she laid there in extreme pain waiting for this thing to finish injecting all the dye into her arm. Jaimee says on a scale of 1-10, the pain was about a 9. It take a few days for the medicine to get out of her arm, so her arm has been hurting a lot.

Anyway, the results of this week's brain scan are still positive. The antibiotics are having an effect on the abscess, so the plan is to continue the antibiotics. The doctor wanted to put a PICC line in, but with Jaimee's veins so bad, she is afraid they wouldn't even be able to get it in. So we are going to try oral antibiotics. There are 3 different kinds of heavy antibiotics in addition to all the other medications she is on.

The doctor is concerned that they will hurt her stomach and she won't be able to keep them down. If that happens, they will go with the PICC line. If she is able to keep them down, her next brain scan will be in 7-10 days.

By the way, the abscess will now be known as Fred. Thanks to Ann for suggesting the name. So we want Fred to drop dead!!!

Name That Abscess

Jaimee finally got the results back from her brain scan on Monday. The abscess shrunk somewhat but not as much as the doctor wanted. She also was not able to keep anything down for a day or two, so he wants Jaimee to stay on the IV antibiotics for several more days.

Also, he set it up that she could get home health to come and administer the drugs and monitor her at home. She was starting to stress out about having someone watch the kids and someone else drive her to the infusion (or whatever you call it). It took about 3 hours between getting there, them finding a vein that didn't blow, and getting home. This way it takes 1-1/2 hrs. at home.

This post is from Kenna as Mike has had a really busy week. I welcome him updating this blog as he says it all so well. Sometimes I tend to get emotional and end up saying too much or too little. But Jaimee is starting to get on her feet from the illness this week. She has another scan on Monday to see what the lovely abscess is doing.

I think we should name it. What do you all think?

Really sick but no news yet

It's Tuesday, and Jaimee is really sick today. We are thinking she caught the bug that a few members of the family had over the weekend. So we don't think today's illness has anything to do with her abscess. Except for one thing: antibiotics wreak havoc with your stomach, and she has been on so much lately, so it is making her especially uncomfortable.

She is miserable today. Her head hurts really bad, and she can't take her usual pain medication because she is on so much medication already, the doctor doesn't want to add to it. Right now Jaimee is on antibiotics, steroids, anti-seizure medicine, and blood thinners. She also can't keep any food down today. She is trying to take sips of water and gatorade to prevent getting dehydrated. This morning she tried for 45 minutes to get ready and go to work. Obviously she didn't make it.

She had a brain scan yesterday and we are still waiting to hear the results of that. She talked to the doctor's nurse earlier to let them know what was going on. She is hoping the doctor will give her the results over the phone, since she is so sick there is no way she can go in to the doctor today. If they need to do any medical treatments today, we are hoping they can send a nurse here to the house.

It's not all bad right now. One good thing is her work has been very understanding of her condition. She is lucky that she doesn't have to worry about her job. She has enough stress as it is.

PS

I just wanted to add a PS to what Mike wrote.

The reason Jaimee had such a bad day is because yesterday morning (Thursday) Jaimee had a grand mal seizure. It is common for people to sleep for hours after that, yet Jaimee was unable to get the rest she should have yesterday.

We were a bit concerned that she had it because she had received so much medication we thought the abscess would have shrunk. As it turns out, there was a reason. After her treatment Wedneday the doctor told her to rest and avoid stress. She ended up rushing Finn to Primary Childrens' ER that evening. By the time she and Raheem got home it was late. The doctor told her yesterday the stress was what probably brought on the seizure. BTW, Finnley is fine but there was some concern for a while.

Anyway, everyone is helping her as much as possible so she can get the rest she needs (right! with 3 small children).

We appreciate your love and concern and hope it helps to receive updates via the blog as some have many questions.

Rough day today

Today wasn't a great day. Jaimee felt really sick this morning. She felt like she had a fever, but she doesn't think it was actually a fever. She felt nauseous and didn't eat for most of the day and her head hurt too much to even watch TV. She talked to the doctor's office and they weren't concerned by this. These symptoms are not unusual for someone with a brain abscess.

The doctor said she could skip the antibiotics today, since she was feeling so crappy. So she was able to stay in bed and get some rest. She has had 4 days of good antibiotic treatment, so missing one day wouldn't be a problem. Tomorrow she will go get more antibiotics, and another IV.

One big problem with IVs is Jaimee's veins are so bad, there are very few veins they can use. If they use a bad vein, it can disintegrate minutes after the IV goes in, so they have to start all over. To get to the best vein, they have to go thru her wrist (palm side), which is more painful than a typical IV. And after 4 days of IVs, her arms are really sore.

Hopefully her good veins will hold out. She is scheduled for another scan on Monday, and we won't get the results until Tuesday. Hopefully the scan will show that the antibiotics are working and the abscess is getting better.

A brain abscess

So we have some good news today. Last week, Jaimee had a brain scan. The radiologist (who is on the Huntsman Cancer Institute's tumor board) said it may not be a tumor. It may be a brain abscess. She went in yesterday and they started her on heavy antibiotics and steroids.

Today her doctor confirmed that it's an abscess and not a tumor. So, that's good news. Her doctor said if you had to choose between a tumor and an abscess, you'd rather have the abscess. But that doesn't mean an abscess is nothing to sniff at. An abscess is life threatening if not treated.

We don't know yet how bad her abscess is. The longer an abscess is there, the harder the shell around it gets, which makes treating it with antibiotics less effective. So the key is early detection. Not sure yet how hard this one will be to treat, but one good sign is yesterday Jaimee had a really bad headache, she started antibiotics intravenously, and today her headache is better than it was.

For now, every day she needs to go in for a 3 hour session of IV antibiotics, and then they will do another brain scan to see how the abscess looks. We'll keep you updated.

First post

My name is Mike Thiriot. Last year my sister Jaimee was diagnosed with a brain tumor. It was causing many problems for her (headaches, insomnia, vision problems, ect). In order to fight the tumor, she had to endure two rounds of medication. Each round lasted 60+ days, and the medication made her much sicker than the tumor had. The doctor hoped that the medication would shrink the tumor.

After months of medication, the tumor shrank enough that her doctor was satisfied. She was able to go off the medication and resume her life. This was less than a month ago.

Last week she was told that she has another tumor, an inoperable tumor. This tumor wasn't there a few months ago, so it must have grown quickly. She will see her doctors next week and learn what the best course of action will be to fight this.

This blog is created to document her fight. Hopefully there will be no problems with medical insurance and medical bills, and we are confident that she will beat this tumor.