She also received a package from The Heavenly Hats Foundation. We're not sure who contacted them but we thank you so much. Haven was so excited. She's sleeping with her new dark purple bear tonight.
Her new purple bear
One of her new hats!Saturday, May 10, 2008
Thank You
Haven did a special thank you today to Dr. Cooper and the office. She got more mail from Miss Dawn and other people at the office. She was so excited....she was tearing up over the whole thing. She just can't believe that so many people send her stuff.
She also received a package from The Heavenly Hats Foundation. We're not sure who contacted them but we thank you so much. Haven was so excited. She's sleeping with her new dark purple bear tonight.
One of her new hats!
She also received a package from The Heavenly Hats Foundation. We're not sure who contacted them but we thank you so much. Haven was so excited. She's sleeping with her new dark purple bear tonight.
One of her new hats!
Friday, May 9, 2008
Another Hair Cut
Well tonight was a rough one for us. I came home from work and Haven was cuddled up with her dad. She came over to give me a hug and her mouth has white blisters all over her lips. The top lip is almost bleeding with the blisters and the bottom lip is completely blistered on the left side. This is a side effect of the chemo. I was just heartbroken. I couldn't believe it.
Grandma Virginia bought her some lip gloss while she was out here and Haven had almost used all of it keeping her lips moist. The doctors said we have to keep her from picking it or the blisters will get worse. They said to keep chapstick on them at all times.
Then she told me she was very itchy and her hair was itchy. Last time she said that we lost quite a bit of hair in the car. So I told her a nice warm shower would make her feel great. So we got in the shower and I was washing her hair and clumps of hair was coming out in my hands. UUUGGGG....This is so hard. I didn't let her see any of it.
I got her out of the shower and convinced her that it's so hot outside and that we should cut her hair to make her feel better. I probably cut off another 4 or 5 inches. When she turned around and saw all of it on the floor she looked at me with the saddest face and started to tear up. Causing me to start crying. She just held on to me so tight. She didn't want dad to see her hair. I kept telling her how beautiful she is and how her Grandma's are going to like it. That Grandma Virginia would probably think it looks like her hair. That made her happy. She asked if her nurses would like it. I told her they are absolutely going to love it.
She kept holding on to me making me cry worse. She was hiding her face in my shoulder and didn't want dad to see her. I finally convinced her to get on the couch and let me take a picture for her family to see. Then I told her we'd have something creamy and spoony (this means jello with whip cream). She was happier after that.
We ate our jello snuggled up together and then we took ALL of the meds. She went to sleep feeling much better and watching Alladin.
I don't know what to do over the next couple of weeks as it keeps falling out and her side effects get worse. I just love that baby girl. I hate that she's going through all this pain. I wish I could take it for her.
Grandma Virginia bought her some lip gloss while she was out here and Haven had almost used all of it keeping her lips moist. The doctors said we have to keep her from picking it or the blisters will get worse. They said to keep chapstick on them at all times.
Then she told me she was very itchy and her hair was itchy. Last time she said that we lost quite a bit of hair in the car. So I told her a nice warm shower would make her feel great. So we got in the shower and I was washing her hair and clumps of hair was coming out in my hands. UUUGGGG....This is so hard. I didn't let her see any of it.
I got her out of the shower and convinced her that it's so hot outside and that we should cut her hair to make her feel better. I probably cut off another 4 or 5 inches. When she turned around and saw all of it on the floor she looked at me with the saddest face and started to tear up. Causing me to start crying. She just held on to me so tight. She didn't want dad to see her hair. I kept telling her how beautiful she is and how her Grandma's are going to like it. That Grandma Virginia would probably think it looks like her hair. That made her happy. She asked if her nurses would like it. I told her they are absolutely going to love it.
She kept holding on to me making me cry worse. She was hiding her face in my shoulder and didn't want dad to see her. I finally convinced her to get on the couch and let me take a picture for her family to see. Then I told her we'd have something creamy and spoony (this means jello with whip cream). She was happier after that.
We ate our jello snuggled up together and then we took ALL of the meds. She went to sleep feeling much better and watching Alladin.I don't know what to do over the next couple of weeks as it keeps falling out and her side effects get worse. I just love that baby girl. I hate that she's going through all this pain. I wish I could take it for her.
Thursday, May 8, 2008
Day 3 - The Big Chemo
Well today was the big one. Our appointments are usually at 9am but today we had to be there to start by 8:30am. Haven actually wanted to walk to the doctor instead of wheelchair today. I was surprised but happy.We started drinking our water and tea around 6am. Haven can down a 12oz bottle of water like a shot. She loves these days because we don't say no or stop. We got to the hospital and they checked her hydration - again she is well over hydrated and we can start immediately.
The clowns came to visit today. Last time she was too scared and pretty drugged up to want them around. Today she talked to them a little - she was working on a card for Dr. Cooper when they came in so she wasn't a big fan of having to stop. But we did get a picture.
Nothing crazy with the Cytoxin today. When we got home from the hospital she had a pretty good fever going. Her hair was soaked and she was so red all over. Got her on the couch and let her sleep it off. Around 8pm she started to wake up out of it. In time for meds and getting ready for bed.We have the Zofran ready. She takes it every 6 hours for the next 24 hours because the Cytoxin makes you very sick. Then after 24 hours we can ease up unless she feels like she's going to be sick. It helps her a lot. This is actually one of my favorite meds with all the chemo she gets.
Honestly, I know that tomorrow she will be ok (or I feel she will) it's the weekend that has me concerned. The side effects of Cytoxin take up to 36 hours to kick in. So this weekend we will stay at home and take it easy. We'll do a slow Mother's Day.
Haven's cousin Baby Stryder and Aunt Katie are coming in to visit for the weekend. I'm sure that will be about as much excitement as she can handle.
Day 2 of 3
Kris took her in again today. This was for IVIG. It was a long day. They were there from 8:30am until 5pm. She did pretty well. They gave her the sleepy benadryl but she fought it today and refused to sleep. She made a friend there that played games with her most of the afternoon. She said she called her "Grandma" because she was older and looked like a grandma. She was one of the Child Life volunteers. They come in each day to see the kids and play games with them and keep them happy.
In evening Haven was super tired and just worn out. She came outside for a little bit and just kinda sat slumped in the chair. I was able to force a couple pictures out of her to show off her new stuff. She got a new Haven Pink shirt from Grandma Sing and Grandpa BeardOff. Then her Uncle Kevin and his girlfriend Annie sent her an Ocean Princess shirt and matching card. Below are her pictures. She was in and out of sleep. I slept in her bed all night with her. She kept her hand on my face the whole night - making sure I didn't move.
This is what we call Haven Pink (there is a grandma pink which is completely different)
Now we have a Haven Blue
In evening Haven was super tired and just worn out. She came outside for a little bit and just kinda sat slumped in the chair. I was able to force a couple pictures out of her to show off her new stuff. She got a new Haven Pink shirt from Grandma Sing and Grandpa BeardOff. Then her Uncle Kevin and his girlfriend Annie sent her an Ocean Princess shirt and matching card. Below are her pictures. She was in and out of sleep. I slept in her bed all night with her. She kept her hand on my face the whole night - making sure I didn't move.
This is what we call Haven Pink (there is a grandma pink which is completely different)
Now we have a Haven BlueTuesday, May 6, 2008
1st of 3 days this week
Today was day 1 of 3 straight days of chemo. Kris is taking 2 days by himself so we can start splitting the shifts. He will be taking her again tomorrow and I will be there Thursday.
She did well today. She even did her port without the numbing lotion. The nurse said she wants to video tape Haven so they can show it to the other kids so they can see how it's ok to have your port accessed.
She will keep it accessed all week so they don't have to keep poking the needle in. She's lost another pound - so we are down to 58 now. The doctors can't believe she is losing weight. Most children on steroids gain about 20 lbs (says doctor) but Kris is extremely strict on watching everything she eats and everything he and I buy. We do have to get her up to walk more. Her medicine drains her of energy and she refuses to walk.
Kris met with all 3 of her doctors today. I got the updates via text.
They are not worried about the 2 days of sickness last week as long as it's not a constant everyday thing. The spot on her back is still there but it is the same size. They are still not concerned about it. He spoke with Dr. Paz about her tumor and pretty much got what I got last week. We were told it was completely removed and nothing showed on the MRI right after surgery but it's slow growing. As long as it doesn't start growing fast we're going to leave it alone while we're doing the chemo over the next year. We still have a very hot foot and a very cold foot and lots of attitude.
She's doing fine tonight (well she's talking a lot in her sleep but that's normal). She was very exhausted when I got home at 6pm. She went to bed around 8pm. The doctors are amazed with Haven. She's fighting this pretty strong and considering how much medication they put in her they are surprised that she's not sicker.
We still have the eye issue. I spoke to the doctors last week. They will not move forward with fixing that until the chemo is over. Most likely they will do surgery on the eye and tighten the muscles (so says the doctor). She still has 20/20 in both eyes which again they were amazed with.
Tomorrow she will be out the door by 7am and in chemo by 9am.
She did well today. She even did her port without the numbing lotion. The nurse said she wants to video tape Haven so they can show it to the other kids so they can see how it's ok to have your port accessed.
She will keep it accessed all week so they don't have to keep poking the needle in. She's lost another pound - so we are down to 58 now. The doctors can't believe she is losing weight. Most children on steroids gain about 20 lbs (says doctor) but Kris is extremely strict on watching everything she eats and everything he and I buy. We do have to get her up to walk more. Her medicine drains her of energy and she refuses to walk.
Kris met with all 3 of her doctors today. I got the updates via text.
They are not worried about the 2 days of sickness last week as long as it's not a constant everyday thing. The spot on her back is still there but it is the same size. They are still not concerned about it. He spoke with Dr. Paz about her tumor and pretty much got what I got last week. We were told it was completely removed and nothing showed on the MRI right after surgery but it's slow growing. As long as it doesn't start growing fast we're going to leave it alone while we're doing the chemo over the next year. We still have a very hot foot and a very cold foot and lots of attitude.
She's doing fine tonight (well she's talking a lot in her sleep but that's normal). She was very exhausted when I got home at 6pm. She went to bed around 8pm. The doctors are amazed with Haven. She's fighting this pretty strong and considering how much medication they put in her they are surprised that she's not sicker.
We still have the eye issue. I spoke to the doctors last week. They will not move forward with fixing that until the chemo is over. Most likely they will do surgery on the eye and tighten the muscles (so says the doctor). She still has 20/20 in both eyes which again they were amazed with.
Tomorrow she will be out the door by 7am and in chemo by 9am.
Saturday, May 3, 2008
Losing Hair
Well I have noticed over the past week that Haven's hair is thinning. I can tell when I put a pony in or clip it back. Her bangs are thinning first and it slowly seems to be following the part.
Tonight my parents took us to dinner in Glen Burnie so I had time to hang out with her in the back seat of the car. She kept complaining that her head was itching and she kept scratching it - driving me crazy. So I told her I would rub it and for her not to dig at it. I rubbed her hair for about 30 seconds or so before I moved my hand away. Only to have a handful of hair. It freaked me out so bad I quickly hid my hand so she couldn't see it.
I rubbed her head again and had another handful of hair. Now I'm just upset. I can't believe this. I show Kris my hand and of course he's upset about it. I feel so bad for her. I rubbed her head until she fell asleep. I was covered in hair by the time we reached the restaurant. I pulled it back in to a clip for her.
We got home and she brought one of the hats that Grandma Virginia gave to her to me. She wants to start wearing them because when she's in the sun it really hurts her hair. In the next week she will be slowly getting haircuts so she doesn't notice it too much at first.
My little baby.
Tonight my parents took us to dinner in Glen Burnie so I had time to hang out with her in the back seat of the car. She kept complaining that her head was itching and she kept scratching it - driving me crazy. So I told her I would rub it and for her not to dig at it. I rubbed her hair for about 30 seconds or so before I moved my hand away. Only to have a handful of hair. It freaked me out so bad I quickly hid my hand so she couldn't see it.
I rubbed her head again and had another handful of hair. Now I'm just upset. I can't believe this. I show Kris my hand and of course he's upset about it. I feel so bad for her. I rubbed her head until she fell asleep. I was covered in hair by the time we reached the restaurant. I pulled it back in to a clip for her.
We got home and she brought one of the hats that Grandma Virginia gave to her to me. She wants to start wearing them because when she's in the sun it really hurts her hair. In the next week she will be slowly getting haircuts so she doesn't notice it too much at first.
My little baby.
Everything changes so fast
From Haven not having many issues with the chemo to slowly starting to feel achy. Then all of the sudden last week spending 2 days sick and throwing up.
Then last night I was about to go to sleep - Haven woke up to tell me there were sores in her mouth. Which I thought she had bit her cheek or something. I asked Kris if he knew what she was talking about. He mentioned a few days ago the case worker called and was talking to him about Haven and her chemo. She asked him if Haven had any mouth sores yet...he was surprised and immediately told her no. No one mentioned anything like that to us - no listing of that in the symptoms paperwork. But she has mouth sores...little white dots in her mouth.
Then later in the day she was doing something weird with her mouth and Kris asked her if something was wrong. She kept complaining that her teeth felt "soft". Well I don't know what that really means but I felt all through her mouth for loose teeth. The doctors always want to know if there are any loose teeth. Everything felt fine so I brushed her teeth for her. Seemed to help a little.
It's just crazy how everything is ok and then it all hits at once.
Then last night I was about to go to sleep - Haven woke up to tell me there were sores in her mouth. Which I thought she had bit her cheek or something. I asked Kris if he knew what she was talking about. He mentioned a few days ago the case worker called and was talking to him about Haven and her chemo. She asked him if Haven had any mouth sores yet...he was surprised and immediately told her no. No one mentioned anything like that to us - no listing of that in the symptoms paperwork. But she has mouth sores...little white dots in her mouth.
Then later in the day she was doing something weird with her mouth and Kris asked her if something was wrong. She kept complaining that her teeth felt "soft". Well I don't know what that really means but I felt all through her mouth for loose teeth. The doctors always want to know if there are any loose teeth. Everything felt fine so I brushed her teeth for her. Seemed to help a little.
It's just crazy how everything is ok and then it all hits at once.
Haven's Wall
I just wanted to share a couple of pictures of Haven's Wall. The stair railing has turned in to a wall of cards from everyone around the world. She is so excited to have this wall and every day that she gets cards she has them saved for me to hang on the wall - envelopes in a separate pile so I have the addresses.
Today she received a big package from Dr. Coopers office with a summer bag and beautiful books. She was so excited that Dr. Cooper sent her stuff.
The Stilwell's in Minnesota sent Haven some pictures of their mountain bikes with "Haven" stickers on them. The note on the back said: Hi Haven, We put stickers of your name on our bikes to make us ride faster! So sweet. They also sent Haven a cute gift card to WalMart. Thank you Zach and Steve and the Stilwell Family!
She also received a card from Alyssa Cooper (Alene's 2 year old grandaughter!) in Phoenix, AZ. So sweet. We now have a beautiful picture of Alyssa on her wall of
As you can see I am saving every card and will be putting them in to a scrap book album for Haven to read some day when this is all over. Thank you all so much. We really appreciate it and we love you all.
Thursday, May 1, 2008
MRI Results 4-28-08
We received the results from Monday’s MRI while in the hospital on Tuesday. Haven has another mass (tumor) present in the same location as the original one. The size is now at 1.5 x 1 cm. It is again on both sides of the aorta and up against the spine.
As of right now we will not be doing anything with the tumor. Her immune system will be completely shut down as of May 8th and we do not feel it’s worth the risk of an infection due to more surgery.
We will be watching the tumor through MRIs taken every couple months. Her tumor has a history of being slow growing and right now it is pretty stable. We will be taking it one day at a time.
I will keep everyone updated as to any information regarding this.
As of right now we will not be doing anything with the tumor. Her immune system will be completely shut down as of May 8th and we do not feel it’s worth the risk of an infection due to more surgery.
We will be watching the tumor through MRIs taken every couple months. Her tumor has a history of being slow growing and right now it is pretty stable. We will be taking it one day at a time.
I will keep everyone updated as to any information regarding this.
Affects of Chemo
Last week she was feeling like the flu for about 24 hours. Just really
not herself.
This Tuesday she started to feel achy and hurting around 6pm. She
didn't want to talk to anyone and just hung out on the couch. Wednesday
she was worse. By the time I got home she was in hell. I came home to
her screaming in pain in the bathroom, Grandma Virginia in there with
her and her dad at the top of the stairs with a thermometer. Buckets
laying around the house. I went into the bathroom and her hair was
soaked in sweat and she was crying that it hurt. Her stomach was
cramping so bad. We got her cleaned up and on the couch with a heating
pad.
Luckily I went to bed early, at 3:30 am she woke me up to come sleep in
her bed. I didn't even ask her why and jumped in there. She had the
heating pad on her stomach and she was curled into a ball. I massaged
her stomach and back for a long time. Around 4:30 am she started
screaming the she needed to go to the potty. We all got up and took off
in there. The scream of pain just goes thru your body and you can't do
anything but watch her. I was hugging her while she was on the potty
and then she started throwing up. I grabbed the trashcan in time and
filled that up. Kris came in and took off to Walmart to get medicine
and suppositories to help her out. I got another bucket from Grandma
and she just kept throwing up. Grandma made her some tea to calm her
down. Dad got home and we gave her the Zofran and helped her with the
bathroom duties.
After about 40 mins in the bathroom we were able to venture out to the
couch. She is being extra slow today and Grandma is taking good care of
her. Dad is out picking up prescription refills.
My question to everyone after all this was "Did I shower yesterday?"
Which in turn lightened up the mood a bit.
So before sunrise the entire house was running like a bunch of crazy
chickens. Haven is doing better and is working on her pictures and
cards again.
Until next week. We have 3 days in a row next week of medicine so
Mother's Day plans are on hold as she is sure to be sick thru the
weekend.
Thank you Omma!
Another super huge thank you to my parents. They have been helping us quite a bit when Grandma Virginia is not able to come out. They will usually take Haven in the late afternoons and help to feed her and play with her so Kris can work and I can get some stuff done. Then we are usually over there all weekend every weekend. Last night my parents came over and my mom gave me $1,000 towards Haven and anything she needs. I AM SO THANKFUL! I have a bank where I put all of Haven’s WalMart cards and any money she receives. This will definitely be a huge help over the next few months as things start getting crazier.
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