Extra Considerations / Food Restrictions

Since her immune system is so compromised, she is on a somewhat restricted diet.
No fruits or veggies that can't be peeled. (like no rasberries or any kind of lettuce. If she really wants lettuce we would need to buy veggie spray and wash it thoroughly. They are worried about the bacteria from the ground)

• Everything has to be washed before she eats it and cooked through
• No fast food (if she has to get it, must be freshly prepared to prevent bacteria from sitting under the light)
• No buffet type places
• no veggie sprouts
• No deli meat, hot dogs, or processed meats they have high sodium (must be recooked if we give her any)

Food restrictions because the steroids are going to make her almost diabetic she can't have things that are high in sugar or sodium.

• No chocolate milk, no regular pudding, no sweetened yogurt. (has to be sugar-free or low fat)
• No doughnuts or pastries
• No prepared rice and pasta mixes like hamburger helper
• No bacon, sausage, bologna, scrapple, ham, corned beef, sardines, hot dogs, salami, lunch meats
• No meat prepared in sweetened sauce
• No canned fruit that is in heavy syrup
• No V8
• No chips, pretzels, or popcorn
• No canned soups
• No canned veggies

Other restrictions

• No fresh flowers
• No use of a humidifier (due to the water sitting)
• No crowded places, like the mall
• No brushing her teeth w/ a regular toothbrush because it could cause cuts in her mouth and she doesn't have the ability to clot well. Also there is a lot of bacteria in the mouth so they wouldn't want anything to get infected because she has not immune system.
• No flossing
• No cleaning out her ears w/q-tips
• No cutting her nails

There is more I need to write but we are going to the procedure and need to get ready

Day 7

Isabelle took her second shower shower this morning. She was very scared because they had to tape a bag over her port. She was also very cranky. She didn't want to do much all day, but she did do this water paint book, part of a preschool workbook, and color a little bit. She fell asleep from about 3-6ish. My mom and Sabrina came by and Isabelle perked up a little bit and played with her sister. They kept hugging and kissing each other, too cute! Most of the day they have been prepping us to go home. It's 10:36 and she is still awake, which is good because shes scheduled to go under around 10am. (that means no food and water after midnight) She is getting chemo tomorrow and bone marrow drawn to see where she's at. Later on they're giving her more chemo.

This company called flashes of hope takes free professional pictures in the hospital and they came by today. We, of course, took some. Isabelle didn't really smile, but I'm sure they came out good anyway. There was a make-up artist there that put eyeshadow on her (which she picked), blush, and lip gloss on. Isabelle was loving it. She wanted lip gloss that matched me. She said I want pink like mommy!! It was so cute, with the eyeshadow she picked a color and then was like, "mommy, is this cute?" Adorable!

Her condition right now: Shes considered neutrophenic right now, which is basically meaning that she has 0 immune system. They are probably going to send her home like that because her red blood cells and platelets are going to be decent before she leaves. (Shes getting transfusions tomorrow) Her white blood cells are very low and they can't transfuse them because it will only cause the cancer to grow. For the next at least 2.5 years she will have a constant battle of keeping her blood levels from dropping. The chemo kills the white blood cells which have a lot of the cancer cells too. What sucks is even though its killing bad cells, it kills the good ones too. It gets a lot more complicated than this, but this is the simplified version to my understanding. (It may not be worded the best) A lot of times they will be able to predict when she'll need a transfusion. For example, if they see her count is dropping day by day they can kind of guess when she'll need it.

Its overall been a bla day, Isabelle has been very low energy and a little cranky. At least today she was in pain, but she gets more chemo tomorrow so its short lived. They are going to send us home w/ prescription for tylenol w/codine and morphine pills. The worse chemo that she has is the vincristine. (don't know if i spelt it write, the correct spellings on the previous post.) Thats the one thats causing her jaw pain and joint pain. She hasn't had any mouth sores from it yet, but shes getting special mouth type wash to prevent it.

Day 6

Busy day as always in the hospital. We spent a lot of today prepping to go home. (They want to try to get us out by Friday) They said even though we're scheduled for chemo once a week, that we'll probably end up at the clinic here in Fairfax at least 2-3 times a week due to Isabelle's blood count dropping. They've been teaching us ways that we will be able to tell : bruising, bleeding from nose/mouth, fever,being pale, lethargy, ect.) They said if we notice that to just call the clinic and if its just her blood count or platelets then they should be able to do it then and there. (then she could go home right after) If its after a certain time then we'd have to go to the hospital. They are going to schedule us to go to the clinic Tues or Wed. just to check her blood. If she gets a temp. of 100.4 or higher she will immidiatly have to be hospitalized. That doesn't necessarily mean she is sick, it could just mean she needs a transfusion. Right now shes considered neutrophenic meaning her immune system is compromised. Her overall blood count has dropped since yesterday, but they expect it to drop for a long time. They may give her another transfusion tomorrow or early Friday morning before her surgury to get her counts up, it just depends on how low they are.

Friday shes going to be put under to check her marrow and to be given chemo in the spine. Her recovery time is expected to be an hour. After that time they will give her the rest of her chemo through IV and mouth. If all goes well and her blood is good then they will let her go that evening. They are going to send us home with pain meds for her jaw. (side effect of the VinCRIStine chemo) We will also have prescriptions for morphine, numbing cream, steroids, and mouth wash.
-Chemo :
                VinCRISTine - given by IV
                 Intrathecal Cytarabine - given in the spine (has only gotten once and don't know if she will get it again)
                 DAUNOrubicin- given by IV
                 PEG-asparaginase- given IM
                 Intrathecal Methotrexate - given in the spine
For steroids shes going to get Dexamethasone which causes high glucose levels by inhibiting insulin from doing its job.

Our day : Lots of people spoke to us today, as usual. We ordered her a wig, just in case she feels insecure about losing her hair. (Shes known for her hair and she loves it so I really feel like its going to be hard on her) I felt bad because she asked me loudly what a little "boys" name was. The childs mom quickly replied with shes a little girl and her name is _. She was probably about 7. I felt so bad, but I know she knew Isabelle didn't understand. Isabelle was cranky 90% of the day. Her jaw pain wasn't as bad as its been. Sabrina visited and she had to leave early because she was a handful. She had a tummy ache and was full of rotten smelling gas and her gums are bloody and swollen. (those canines are not out yet!!) Isabelle perked up around 8pm. Her favorite nurse Erica took her for a walk. When she saw her crush Amil, she was like I want Amil to carry me. Amil carried her around for a while. They painted her nails and then she painted Amils. It was so cute! During that "down" time I filled Abel in on the day. He had gone home to "prep" a few things. I'm really tired, but I just wanted to write a few things on here!

Chemotherapy

Overall she is doing very well and shes supposed to go home Friday after she goes under for chemo and more bone marrow. We will then have to bring her back 1-3 times a week to their outpatient clinic for chemo. This is where they will reopen her port and take blood. She will have to go under for spinal chemo about 4 more times this month. When they take her blood they will tell us how her blood levels are doing and what amount of exposure to people she can have. For instance if she has low count they will say no stores, maybe just the park when its not busy. If her blood is good they will say ok, go to the mall but in the morning. If she gets even a cold or any kind of fever she has to be hospitalized for days because it will make her high risk. They said she will probably need a lot more transfusions in the future because of her condition. With her port the doctor said she will be able to take baths and go swimming once its healed. When she leaves the hospital, all she'll have will look like a bottle cap under the skin in her chest. Whenever she comes to the clinic they will numb the skin and stick it to get blood/give chemo. They said she should be in remission by day 8-15 if all goes well and that she may be cured as early as 2.5 years. She should start losing her hair anytime after Thursday. Thats going to be hard because she doesn't look sick right now, but shes going to. They have programs that will give us a wig for free.

Stem cell- I know a lot of people have been asking about stem cells. They are not going to use any kind of stem cells. They said they only do that when the chemo is not working or when the patient isn't doing well. If we had saved Isabelles cord they def. wouldn't use that because it would have the cancer cells in it. With that being said they have a program that will harvest the new babys cord blood for us for free, we will just have to pay a monthly fee for storage. (just in case)
This is just a summary of the past few days.
3/8/2011- She woke up screaming at 6 w/jaw pain. They gave her tylenol w/codine and she was able to get back to sleep. She ate yogurt for breakfast, but is in a lot of pain still so they gave her morphine. She took a shower today and they changed her port dressing. She screamed the whole time and we had to hold her arms away from it. Shes feeling a little bit better now once the medicine kicked in and she went to the play room with Abel and the child life lady to play. The doctor came in and told us AGAIN, well told Abel that there is nothing wrong having the pets. She told us that she would not get rid of them and that its good to have them. She said there is no risk to them licking her. If they lick her on an opened wound to just wash it with soap and water. She is the second doctor to say its ok and not get rid of them because Abel wanted a second opinion.
3/7/2011 - Busy Busy day. Isabelle is in a lot of pain, she can't eat or drink because her jaw hurts. The gave her tylenol, then tylenol w/codine, then morphine. She was able to eat a little for dinner and drink after the morphine kicked in. She was feeling better. When the nurse came in she was in the bathroom and she told me to hurry and wipe her so she could say hi to the nurse. When we got out she wanted the nurse to watch a movie w/her and play. The nurse said she'd come back because she had to finish her rounds. When she was done she took Isabelle to the nurses' station to play. She said Isabelle is officially everyones favorite patient, no surprise there.
3/6/2011 - They removed the iv tubing in her arms, which hurt her. The port is amazing and they are even able to take blood while shes asleep. Isabelle really likes a lot of the nurses now and they've been playing w/ her. Shes now looking forward to getting her blood pressure and temp. We have been going to the play room and pushing her around in the car. Shes had ups and downs today. Crankiness is a side effect. Sabrina came to visit which was very nice. Abel and my mom pushed them around in cars and they raced.
3/5/2011- On this day she has surgery to have her port put in, chemo in her spine, bone marrow extracted, and spinal fluid extracted. Very scary, but all went well. She threw up all over herself from the anethesia, and immidiatley said, "I threw up like Coconut!" (our dog) It was cute. Shes had to sleep w/a pull up on, which she doesn't like because w/all the fluids shes been getting shes been wetting the bed. Shes also having diahhrea that is explosive as well.
3/4/2011- So many people came in today, it was her first day of chemo. She had an ultrasound of her heart done. She was so cute, she was like "OOOOHH!! Theres a baby in my stomach too!! Just like mommy!! And its a little girl and she has a bow!! " She went on to tell the nurses that I had a baby in my stomach too named AJ. Too cute! She kept calling the nurses dentists. Everyone is very friendly, but another day of sticks. She felt more energized today because she had the transfusions. (She actually had a couple more transfusions) When they did her xray she said cheese and enjoyed it very much. She related it to one of her Little Critter books. She gets upset everytime they do blood pressure or anything. Its really hard because I have to make her sit still. Sabrina came to the hospital to visit, its very hard to be w/o her, but at least we know shes ok. Earlier we had tried video chatting w/ Sabrina and my mom from the hospital, but it just upset Sabrina. She started calling me and telling me to pick her up through the computer.She started crying when I couldn't pick her up. So sad.
3/3/2011- Abel took Isabelle to the doctor for a check up because she was sort of lethargic. The doctor almost didn't do blood work because she thought, like we did, that it was change in activity level. (Also Isabelle was waking up a lot in the night) She told Abel that she would hate to stick her for no reason, but Abel pushed for it. When they came back with the results they told him that she might have leukemia and she needed to come to the hospital in Fairfax as soon as possible. We packed up and got there around 6-7ish. They stuck her again to get her blood and confirmed that she had it. We were then sent over to a room where between that night and the next day she was stuck about 10 times. It was a rough night between her getting checked on every hour and her going to the bathroom every hour because they were pumping her with fluids. They gave her a blood transfusion and platlet transfuion that night. My mom flew in at around 11 pm and Abel went to get her from the airport and she went home with Sabrina. It was a miserable night for Isabelle, filled w/lots of tears.