Wednesday, June 25, 2008
We’re tapering on the steroids but to tell you the truth it seems as though everything is getting worse with the tapering. Maybe that’s how it’s supposed to be. Haven is more fired up and snappy than ever before. She is constantly, and when I say constantly I mean 24 hours a day, thinking about food. She was even upset the other night telling us that it’s all she can think about and she doesn’t know why. Now she’s on this kick where she won’t go anywhere unless we go as a family. I asked her to go to the store with dad yesterday and she said she can’t go unless I’m there that she wants to be at the store as a family. Yes, it’s very sweet but I think my daughter is sneaky!!! So I said, “well I’m home now, let’s go to the store”. She panicked and grabbed her cards and started yelling that she had to make Thank You cards for all the people that sent stuff to her. She can’t go to the store. So I stayed home and Kris went. Guess what, Haven sat there and made about 15 Thank You cards. She’s so funny.
Oh, I told her she could make her own snack too. J She asked if it could be creamy – sure why not. I think 30 seconds had passed and it was too quiet. I went to the kitchen and the entire tub of cool whip was on top of this very small amount of jello! I of course scooped it off and told her if she went to bed quietly after she ate it that I wouldn’t tell dad she tried to eat all the creamy. She agreed. It was so cute. After the earlier binging she’s been on a super strict diet.
Sunday, June 22, 2008
Today we took her out hiking. She hasn't been hiking since last October with me and my parents. So this was a good day. She walked the entire way through the trails and we looked at butterflies and dragonflies. They were all over the place. Her favorite was the caterpillar. She and dad had a great time with the caterpillar.
Then we took her back to Michaels (they are having a very good sale on kids crafts). We bought some sand art and some stepping stones. She helped her dad paint and all in all it was a good day. Plus the weather is pretty decent today.
I do have to say - eating 25 or so cookies only made her feel a little sick. I was surprised that she wasn't worse off. At midnight Kris and I were still up on the computers and she came out saying she couldn't sleep. So we had a little party. She came out and she just played and played until 1am. She never slept or crashed the entire day. So I know now that a bunch of cookies will keep my daughter awake from 6am until 1am and back up by 7am the next morning!
Hope everyone is having a great weekend.
Love to all
Saturday, June 21, 2008
Now I have been concerned with myself. I have been sick for a few weeks as I said below. I've gotten so weak that I've fallen down the stairs twice and constantly see dots and feel like passing out. So I have been worried about a specific thing. I have been tested - and I don't like needles of any kind...even baby ones. But I do not have diabetes. All of my symptoms of the past month pointed to diabetes but that is not the case. Whew...as Kris said - there is only enough time in a day to have one person sick not two. But I still need to figure out what is wrong with me. So back to the doctor next week. I have rec'd emails about the endometriosis and breast issues. No I have not gone back to the doctor. I have 3 more weeks to decide what I'm doing - have a baby (doctor's wish), menopause, or wait until 35 under watch of the doctor. Definitely option 1 is out for now - we do not have time right now but my dad thinks we need another. 2 is out because I'm not into the feeling weak right now with everything else going on. Waiting until 35 to have surgery - means 2 more years of pain. Breast - I took the antibiotics (because I didn't want to have anything else done at the time). Well those didn't work. So it's back to the doctor for more testing. Getting old sure is a lot of fun! :)
Thursday, June 19, 2008
Tonight I took her back over to W's and she picked out a cute tank top sundress (it's really a night gown). She looks adorable. Some friends of mine (Dave G) sent Haven a gift card for $100 and it was perfect timing. We're finally out of all the diapers that were sent to us from Gma Virginia's friend so we bought $100 worth of diapers.
We're on a bit of a watch with her tonight. She used the restroom before bed and there was a bit of blood with her pooh. I don't freak about this because we've had it before with the tumor but if she still has it in the morning we will be calling her doctors and take her to the hospital to be checked.
To help with stress and constant bad news I have decided to switch the way I spend money each month to a healthier expense. I have stopped going to Starbucks at lunch each day and in turn signed up at a gym. So far I'm doing good and the gym is about $150 less than Starbucks...plus my butt will start going away! My only issue is that for the past 2 weeks I have been very sick by 9pm and stay sick until morning. My head is spinning, I'm shaky, nauseous, my stomach hurts, and I can barely stand without seeing dots and getting light headed. I don't know what it is but I'm a little tired of it.
Also to help our house, I am making Kris go ride (bikes) at least 2 times a week. He is not allowed back home before 5 hours of riding on Saturday at least. When we were in CA he used to ride 4 days a week and Saturdays he'd be gone from 6am until around 3 or 4 pm. With him not riding, Haven having cancer and everything else, and me feeling like the pits of doom surround me our house can get very loud. So, I bought him some parts that he needed at one of the shops here and have pushed him to build a bike. It is now built and he's going riding even if I have to buy a new lock for the doors.
So that's my plan to make our house a little quieter and hopefully a bit more "cheery" - dare I say that word. If this plan doesn't work, I'm quitting my job, grabbing my passport, catching a plane, and hiding for a few years!
Tuesday, June 17, 2008
First, collecting cards from all the schools and kids out there in St. George. Haven loves them and actually has a couple constant pen pals. Eva calls her Princess Haven Chan and writes her almost weekly and Shaylee sends Haven notes and tells her to call any time of the day or night.
Second, sending the video that all the kids made at the school to Haven. Absolutely awesome.
Third, such a major help!
Dad and Jeannie have been working with Social Services and Child Life Services at JH for the past couple of months. They (G&G Utah) are helping us out with getting in-home help. This is great for Haven and great for Kris. Kris interviewed with them today and has a very nice woman coming to see Haven every Wednesday and Thursday for about 4 hours a day. I will never see her so I left everything up to Kris and if he felt comfortable with her. He said she is about mid-30’s and Haven and Shannon got along great. Haven will be the youngest child that Shannon has worked with but I’m so happy Haven will have someone to visit her weekly. Kris has not been able to work during the day with Haven at home, unless someone comes out to stay with us. He usually waits until I get home and then starts his day and works until 2 or 3 am. Then he’s back up when I leave for work at 6:30 am to be with Haven.
Again thank you Dad and Jeannie – this is really going to help with the stress at home and me having to hear these two whine all the time! :) Love ya
We were with the doctors for quite a few hours, as these meetings are usually very long and overly informative. So much information you actually get a headache within the first hour.
Spot on her back below the shoulders. Well it takes about 3 months of constant demands by Kris and I for them to pay attention. But the spot has grown and looks different than it used to – her doctors agreed. We have a CT Scan being scheduled for this area. They now are not sure what it is. Her doctor is going to contact the surgeon to get his opinion. Once they all meet about it and review prior MRI’s they will call me with the CT date. They will not do a biopsy at this time – even tho I requested it.
Lump at her neck – this is due to the steroids and should start to go down as the steroids taper down.
Her counts – all of her counts are where they should be for what she needs. Obviously they suck but it’s all due to the medications.
Immune System – they believe her immune system was so strong when they started, noting she’s never been sick in 4 years. She still has infection fighting cells – everything else is low but those are still there. Her body is also keeping most of her hair – which kinda makes me mad. I wouldn’t have cut it if I knew most of it would stay. She’s lost a lot but it just looks thin.
Eye – we are being rescheduled in to Wilmer Eye Institute for review. They need to check the angle of the eye. Haven will have to have surgery on her eye to correct it. They will go in and tighten the muscle of the eye. HOWEVER, this can not be done yet. See below on Tumor.
Sleep study – they will be scheduling Haven for another sleep study in July. Kris stayed with her for the last one – I will have to see if she wants me or daddy to do it again.
Endocrine – they are scheduling her to meet with them again to review her body, glands and such. Anything Oncology may not be looking at – even tho the look at everything.
Tumor – we discussed this for a long long time. Well I kept pushing at them about it – I even looked at Kris and asked if he was getting annoyed with me yet! I don’t like it in there – I don’t like knowing it’s there. Well it’s there and as of right now we are doing nothing about it. I asked them about surgery and the doctors were very frank with me. IF they put her on the table for surgery she most likely will die. Her morbidity rate is TOO HIGH right now and she wouldn’t make it through it. Even if she did make it through it she would be at too high of a risk for infection afterwards. All they can do is watch it and hope it doesn’t grow. They will not add more chemo to her schedule for the tumor right now either. So this kinda brought me down a bit.
We did more blood work and left. While in the car Haven called her dad and asked to go out for dinner. He said ok and we went to his fave restaurant. However, I ruined dinner – half way through I just couldn’t take it anymore and I broke down and started spiraling into depression. Start freaking out about Haven never seeing anything and never experiencing anything and how we never do anything. I started crying…..needless to say dinner ended early and we went home. I was much better when we got home and Kris went to get Haven some stuff at Walmart. It was early to bed for me and Haven last night. Now on to the rest of life!
Hope everyone is doing well. This was a long one but so was our meeting! Love you all. M
i. Haven would only sleep 3 to 4 hours at most at night – sleep walking every night – violent sleeping – had to sleep on the floor with her and remove all sharp edged furniture. We did shifts and Kris and I got used to this schedule.
ii. Haven asked for food 24 hours a day and would get violent if food not given immediately
iii. Haven talked VERY LOUD no matter what she said. It became normal until we were around other people. They always thought she was yelling at them but she just yelled.
iv. Haven has never had any emotions and never ever cried as a child. She’s also never ever been sick – if this wasn’t here we’d have a child with perfect health.
v. She was very sweet and loving up until age 2 ½ and then her personality switched very quick to extremely mean. I always said she was like her Daddy! :)
Currently (after 3 months of chemo)
i. Haven is sleeping about 7 hours a night. She’s up by 5am every morning (even weekends). But we’ve grown used to this schedule
ii. Still asking for food 24 hours a day – we now tie the fridge and pantry up at night and have a gate trap in the hall, as well as, lock our bedroom door and put a clothes hamper up underneath the handle. She loves to sneak food and will binge while we sleep. This is the steroids.
iii. No longer talks loud during normal conversation – can even whisper now. She still yells at everyone – especially Grandpa B Honey.
iv. She tears up at about anything. She tears up at Meerkat commercials, bunnies in the back yard, my stone dragon that she sleeps with, her new Mousafur (my mom gave me one at age 13 and now Haven has her own). She tears up all the time when she gets over excited.
v. She will randomly snuggle. More with dad than me but I rarely sit for more than 10 minutes at a time. If she asks him – he will stop whatever he’s doing and snuggle. I have too much in my head that keeps me moving around.
vi. Personality is questionable. She’s mean but snuggly and then mean again. You never know when you are going to get yelled at or demanded to do something.
The doctors are happy with the progress but admit there is still a lot of work ahead. The best news is her disease is degenerative and so far some things are turning for good. They didn't think it would but it is.
Monday, June 16, 2008
Kris and I will be at the hospital today meeting with Haven’s doctors around 1:30. We will be doing an overview check up (she has two large lumps on her back that concern me), we will also be discussing the tumor, surgery on this tumor, chemo progress and where she stands now, and what the plans are for the future.
Personally, I am not sure another surgery will leave me feeling very comforted. If the tumor grew back 3 weeks after surgery then there is a high possibility it will grow back again. I don’t want to put her through unnecessary surgeries for nothing and I don’t want this year to feel like a waste if she has to do chemo next year.
I’ll have more info this evening. I honestly have to say, I doubt we will be answering the phones. Usually after we hang out talking and getting overloaded with news from the doctors we are exhausted. But I will update the blog tonight or tomorrow.
Thursday, June 12, 2008
One of my girlfriends from work has shares in a farm - with a group of other people. They earned 2 free shares of the farm to split or give to other people. I had never heard of this. She came up to me last week and told me that the entire group had chosen me and another girl. They wanted Haven to be able to have fresh vegetables and fruit. So every week we received lots and lots of greens - I don't even know what half of it is. Kris does all of Haven's food. And we get baskets of strawberries - which are Haven's favorite. Thank you Heather!! Meghan brought them over to the house last week after chemo.
Then this morning Emily sends me an email about a new product out there called "Queasy Pops". They make them for pregnancy and children with cancer going through chemo. I sent the link over to Kris and he ordered some for Haven. I'm sure she will like them. You can check them out HERE. I'm glad I was never sick when I was pregnant...but I wonder if these really help.
Well Grandma and Grandpa will not be coming out this weekend. Kris has too much work to do and Haven has a doctor appointment for more than half the day on Monday. So my plan is to drive my parents crazy!!! Actually...I have been given more work and am so happy about it. I was asking to double my workload - I'm not used to not working all the time. So I got a big stack of more work and am excited to get through it. So I may just work all weekend as well.
Hope everyone has a great Father's Day. My thoughts are with my family in TN this weekend. Love to you all.
She’s never had a bloody nose before and she knows I don’t handle her port being accessed very well. So I’m sure that’s why she didn’t want me to see her. Tomorrow Grandma and Grandpa Virginia come to visit for about a week. I know she is looking forward to this. Should be a lot of fun. Hope it’s not 200 degrees this weekend. I will be mowing the grass tonight and fixing the plants and planning my cherry tree. My mom is buying me a cherry tree this weekend – she wants to eat the cherries so I have to have the tree in my yard.
Wednesday, June 11, 2008
Love you too all…..talk soon. Miss ya!
Tuesday, June 10, 2008
Oh and I just found out that there is a recall on tomatoes. Eating some raw red tomatoes has left some people with samonella poisoning. I have Kris checking it out because Haven eats tomatoes like apples.
EDIT: We had 5 showers before 7pm last night - lots of Zofran to help with the sickness. She is doing much better today and the heat has slowly started to subside.
Last Thursday while at the hospital, I received Haven’s at home medication list, which we receive every time we are in there. It just confirms the medication she is taking at home and what her doses are for each one. Well – this one was confusing!!!
There were three different areas of Prednisone…..each with different doses and different dates. Then the nurse hand wrote different dates on there and crossed out the typed dates.
16.2MG daily, 8.1MG=2.7ML 2xday, 6/11 to 6/16 on odd days
21MG once daily on odd days thru 6/9
27MG=4.5ML 2xday, once daily on even days to 6/16
So where does this make sense. With the crazy weekend we had and after a week of doctors I usually don’t want to learn anything new. MRIs freak me out more than anything and I was by myself at this one. So that makes me more freaked out.
Monday morning (after being stuck in an accident for 2 ½ hours on the 95) I called the doctor’s office to talk with Katie – Haven’s nurse. I went through the paperwork with her and she looked up Haven’s file. We were both confused AND it seems as though I was supposed to start the new dosing last Thursday! It doesn’t clearly state that.
Katie and I were on the phone for 30 minutes deciphering the doses for the next month. I am happy to report we are tapering off the Prednisone – all other meds will stay at the same dose for the next year.
June 9 – 15: odd days – 4.5ML and even days 2.7ML
June 16 – 23: odd days – 4.5ML and even days 1.8ML
June 24 – July 1: odd days 4.5ML and even days 1ML
July 1, 08 until March 11, 2009: odd days 4.5ML
Bad News: Tumor is still present. At same location as original tumor in February.
Good News: It has not grown or changed shape since starting chemo.
Haven had surgery Feb. 1 and didn’t start chemo until April 8th. Beginning of March we had an MRI and it showed everything was clear and surgery removed entire tumor. Sometime between March and April her tumor started growing back. It’s around the Aorta and Vena Cava vessels again and up against the spine. The chemo treatment she is on for the next year is NOT for the cancer, it is in fact for the immune system and brain, however, it has seemed to have stopped or slowed the growth of the tumor. So again, for now we will not do anything with the tumor and will continue with her chemo treatments.
We will be meeting with Haven’s doctor on June 16 for an overview of everything so far, all of her counts and what they mean, where she is at in progress, and what the future will bring. We will be discussing the future of the tumor. My fear is that this takes control again and we’re at the 1st stage and this entire year did nothing.
Saturday, June 7, 2008
When Haven was ready for me to get her out of the recovery room yesterday the nurse came up to me kinda weird. Asked if Haven had a bruise on her shoulder when she came in. Ummm....No! So I grab Haven's stuff and get down there. The bruise was huge. The nurses and doctors couldn't figure it out. She definitely didn't have it coming in to the MRI. But I remembered one of the anesthesiologists put the EKG sticker there. Haven has a good allergy to the tape used at the hospital. If I can I try to get them to use different stuff. Last time it caused a blister on her chest.
Friday, June 6, 2008
her 4th MRI since February. I really don't like MRI days. Its so
stressful, we've had issues so many times with MRIs. They said it
should be a couple hours and then she can come home.
We won't know anything until next week.
Thursday, June 5, 2008
here from 9am until 6 pm last night. Haven slept most of the day as the
medicine wiped her out. Then she told me her Grandma friend came and
played with her and it was the most fun she's had. She fell asleep last
night around 7 pm and other than yelling in her sleep she made it
through the entire night.
Blood pressure remins 112/65 and weight is 58lbs. Kris is doing very
well keeping her diet in check. He even started himself on it 3 weeks
ago and has lost about 8 lbs. I'm just starting a diet my friend
Namrita has put together for me.
I'm at the hospital with her today. We have another round of chemo and
tomorrow will be the MRI. Haven is worn out. She refuses to
acknowledge that she's tired. She is asleep sitting up. She won't let
me lay her down. She won in a bingo game yesterday at JH. They gave me
her prize today. She was very happy.
I can't wait to get her home later this afternoon. The meds shouldn't
make her sick until this weekend. Which I'm a bit nervous about the
MRI. We have to be there at 10am and actual MRI starts at 11am.
Monday, June 2, 2008
Wednesday and Thursday are still chemo days and we are there all day on both days. We won't have any information about the MRI or tumor until the following week. MRIs are scarier to me than anything. We've had so many problems with MRIs in the past. She's allergic to the 2 preferred types of anesthesia.
I've not been feeling well the last couple of days - light headed and very dizzy. So I will leave this blog to just the update of her schedule.
Love to all