3/30/2011

Today Isabelle had a great day. She played for about 20 minutes every hour to hour and a half. (It was nothing crazy like running, but she was in a good mood) She had quite a bit of stomach pain today, but the medicine def. helped. We got her new SPF 50 hats in the mail today, which she made sure that everyone had some kind of hat on. She didn't want to take her medicine today and she was crying the whole time. She just kept saying, "but it tastes like throw up!" It was sad and hilarious at the same time. Our friend Amy made us a shutterfly album of the family and Isabelle loved it. Her favorite part of it was the pictures of herself, lol. She also had some clothes come in that we ordered which she was excited about. I think she tried everything out at least once. (She is moving to size 5 now, which is crazy to me because shes only 3.5 yrs.) Isabelle told me that she had a great day today, which was so nice to hear. She has her leukemia story book, called "I'm Still Me" almost memorized. It is like she starts reading me the story. It is so cute.  She is so strong and has been so brave through all the pain that she has gone through and is still going through. I am so proud of my baby...

3/29/2011

Today has been the best day that we've had all week. (For Isabelle this means she was in a halfway decent mood all day, and she was able to walk around a little bit.) We put about 15 stickers in her sticker book and she was very tired after that and had to rest. A couple hours later she walked around a little bit and looked through her cabinet that has all of our crafty-type stuff. She decided that it was time for me to take her nail polish off and redo her nails. I haven't had a chance to put the stickers on because she became tired from the exertion.
She has eaten almost a normal amount today, which was a nice change. I've been having to give her tylen. because she has been having a lot of joint pain. (Associated with the vincristine chemo.) She has also been dizzy.

Update from this evening: She actually got a burst of energy this evening and was playing ring around the rosy with Sabrina. She had this burst for about an hour! It was so nice to see. Hopefully it stays this way for the rest of the week. (Her Friday chemo is going to bring her back to a down.)

3/27/2011

Isabelle didn't have the best day today. All morning she felt sick. She ate 3 pieces of bread today and drank 2 bottles of pediasure. She had a good half an hour where she actually wanted to do her workbook and put Easter window clings up. She then took a 5 hour nap. When she woke up she was feeling a little better and ate some pickles. It looks like we are going to have a late night tonight.

This is a site where I ordered Isabelle a doll that is bald. The doll has a wig too! Its supposed to help with self-esteem with losing their hair. I think she's going to love it!
http://www.komfykids.com/

3/26/2011

Today wasn't a great day, but it was good. Had many highs and lows for Isabelle. She didn't eat much and she had a lot of nausia today, even with her medicine. She was asking me a lot of questions today about her leukemia and about her hair. She thinks Abel has leukemia too because he shaved his head. She told me that she didn't want to taste her "tubey" medicine and that it was gross. When they put anything in her port line she sometimes will taste it and its not pleasant. The lotion and shampoo that I bought for her head has really helped. Its a brand of California baby for super sensitive skin. (it has no fragrance or chemicals)

Day at the clinic

Woke up at 5:30 am to get ready to go to the clinic. We left at 7am and didn't have nearly as much traffic as we normally do, but it still took us well over an hour to get to the clinic. Isabelle was very cranky and tired because she couldn't sleep on the car ride. (the sun kept shining in our faces) They quarentined us when we arrived, just in case she was still sick. She was very cranky and started screaming and crying saying she wanted Coconut, our dog. This went on for about 10 minutes before she asked if we could call her  on the phone. So we called the house and Abel pretended to put the dog on. Isabelle then started crying even harder, telling the dog how much she missed her. So then we video chatted with Coconut.That seemed to make Isabelle feel  a lot better until she realized that she couldn't throw a toy to her, lol. So she had Abel throwing toys for Coco to fetch. It was hilarious and it cheered her up. We video chatted for about 20 minutes. The doctor came in and said her counts were low, as usual, but not low enough for a transfusion. That was great news because it meant a shorter visit. She got both sets of her chemo and seems to be doing ok so far.
She goes back next Friday to the clinic at 8:45 to have her blood counts checked and then 11 am she goes to the hospital for her "procedure". It is going to be a looonnnngg day.

Before we called Coco

After we called Coco

on the way home

Good Week

The past few days have been really good compared to what we've had lately. She is starting to get more energy and has been smiling more. Tomorrow she gets more chemo and a tranfusion. I just wanted to thank everyone who has helped us out. The support has been amazing. I can't even say enough to express our families gratitude. Isabelle is pretty much needing around the clock care and we have been, so busy. We are probably going to lose our house in GA because with all of the new expenses we don't think we will be able to keep up with the second mortgage. (We've racked up at least $3,500 in medical bills in the past couple weeks, which we haven't seen most of them yet. We're spending so much in random "stuff" that she needs that I can't even list) Abel is seeing a lawyer on Thursday. The food we've been getting has been wonderful because we really haven't had time to cook anything. All the babysitting offers has been wonderful. We are just so grateful. They said things will start to slow down after the "Induction" period is over which will be on April 4th.

Home again

Isabelle did ok at the hospital today. She at lunch and was alert. Her blood level was good, but her platelets are low. They changed our Friday appointment to a morning one because she will probably need a platelet transfusion before the chemo. They said we could go home around 3pm, so we did. After we were home for about 20 minutes Isabelle perked up. She wanted to go outside on the swing, so we did for a little while. Sabrina was so happy we were all home. Isabelle ate dinner too. She was still pretty weak, but was actually able to walk around a little bit. Gave both girls a shower and had to be very careful not to get Isabelles port site wet. Her hair is getting really thin now and shes losing quite a bit of it. Earlier I told her we were going to cut her hair a little bit and she got upset saying that she wants long hair like mommy. So, I'm going to cut my hair. I'm not looking forward to it and haven't had short hair since I was like 15, but I think it will make Isabelle feel better. I'm going to donate my hair to locks of love, so its not wasted. It feels, so good to be home. Hopefully we can make it until Friday without another visit.

Hospitalization #2 update

Isabelle woke up at midnight having to go to the bathroom. It was just a little bit of diarrhea, so that was good. She had a hard time sleeping because she was battling with her tubing. She kept getting tangled in it and she was beeping half the night. The way she likes to sleep on her arm, blocks the IV fluid from getting in, so she kept beeping. The nurse and I all through the night kept having to reposition her. At 7 am she woke up and had a small amount of diarrhea. She ate a few bites of bread and pretty much slept until 3 in the afternoon. She woke up for a couple minutes at a time through the day, but was nautious and could not eat anything and did not want to drink.
They said her sodium level was low, so they swapped her fluids to a high sodium based one. They rechecked it and it was about the same, but they also have to give her a blood transufion, so they are going to see if that helps any with the sodium levels as well. They said a side effect of the chemo is loss of sodium in the urine, so we are waiting for her to pee again in order for them to test it. (She has only went pee twice today) She has been wore out all day and they are hoping with the blood that she feels better. When she had the diarrhea they said she lost a lot of sodium that way too. They are probably going to keep us overnight again because its going to take about 3 hours for the blood to transfuse and they still have to wait to make sure she is able to eat and drink. She is a little more alert now and less dizzy. (She couldn't stand earlier without almost falling over)  Her hair is all over the bed, sheets, and pillow case. You can see it thinning in the front quite a bit and she has a couple bald spots now.
 They are supposed to get her wig in sometime this week. I still need to look and find her some soft knit hats to help keep her head warm for night-time. I also need to get some hats, so she can play in the backyard once shes feeling good without getting sun burnt. (just in case she doesn't like the wig)

10 pm update- Well, they checked her sodium after the transfusion and it is still low. They increased the amount of saline fluid that she is getting. They said they are more concerned with low sodium levels than her eating. The low sodiums could cause all kinds of bad things, including seizures. They said she may be full because all of the fluids that shes getting. She was complaining of jaw pain when she tried to eat some dinner (which could have been from chemo) and she threw up the medicine that she took. We cleaned her up and they gave her medicine for her tummy. When it was time for her weekend medicine, she threw part of it up. Now she seems like shes feeling a little better. She is wide awake, but then again she was asleep until basically 3 in the afternoon. I'm so tired. Tomorrow Abel is coming with Sabrina and we are going to switch out tomorrow. As hard as its going to be to leave my Isabelle, I haven't seen my Sabrina for a whole day. When I saw her yesterday it was only for a few hours and it was a stressful visit. Abel hasn't had any time with Isabelle either, so it will be good to switch out.

Day at the Hospital

Well they said that she has a stomach virus right now and its very common. It is typically a 24-48 hour virus but because her immune system is compromised, it may take longer for it to go away. She currently had 0 white blood cells in her system to help fight off the virus. There is nothing they are going to be able to do, but keep her hydrated and treat her poor raw butt. I'm sure she caught the virus when she used to ER bathroom on Tues or Wed night (whatever day we went). Apparently a lot of people have been coming in with it and even the nurses have been passing it around.

Shes had a very miserable day filled with uncontrollable bowel movements. About every 2 hours she poops through and the nurses help me change her, wipe her down, and clean off the bedding. She was late getting her anit-nausia meds that shes on since she just had chemo, and she threw up all over the place. That was of course when Abel and Sabrina were here. Sabrina was a handful to control while Abel and the nurse cleaned up the mess. They had to cover her port area to put her in the shower because she was so covered. Shes been very weak and tired. Its hard to believe that not even a month ago she was running around, smiling, and just happy as can be. Her body is working so much harder to fight off this stupid virus, since she has no immunity. She looks just run down and she has been so weak that she can't even lift herself to re-adjust at times. Earlier this morning and last night she seemed to be doing so much better. This morning she had a huge breakfast, but she barely ate any lunch or dinner. Hopefully she'll start feeling better and the worst is now over. It is so sad to see her like this. We are under a "quarentine" protocol in the oncology unit since we are contagious. We are not allowed to leave the room unless its an emergency. I just hope things start getting better soon.

Clinic Today, ER this evening

Well, Isabelle was scheduled to get chemo today at the clinic at 1:15. She has had diahhrea since they gave her anitbiotics in the ER the other night.  So we asked to doctor about it and she said all was fine and it most likely was the anitbiotics. Her butt is raw, but it doesn't look infected. Her counts were low and she has to come in Monday to get checked again because she may need a transfusion by then. They gave her chemo and took her off the steroid shes on. they said that her being so lethargic all the time isn't really typical, but they think its how shes taking the chemo/steroid.

On the way home she pooped all over herself and the carseat. We pulled over and had to buy more wipes and gloves to clean her off with. It was so much that it got all over the van, down her legs, her chest, and everywhere. We had to be extra careful because the chemo is coming out right now. With her diahhrea, she can not control it, its huge amounts, and its very watery so we've been putting pull ups on her. Even when she passes gas it burns and leaves residue. Well we put her in the other car seat and made it home. She sat on the couch to eat and all of a sudden started screaming. She had pooped all over herself and the couch again. So she got cleaned up and felt well enough that she wanted to go on the saucer swing my dad bought her. She went on that thing for 2 minutes and she pooped through her clothes and all over the swing. So we cleaned her up again. Well she then had to go and she went in the potty. I called the on call doctor and I told him we wanted to bring her in. This is all in a matter of like an hour and a half.

So I got everything ready and headed by myself over to the hospital. As soon as she hopped out of her carseat she pooped all over herself and through her clothes. I put a towel over the umbrella stroller and just set her in it. I saw no point in trying to change her until we got to the room. I wheeled her to the emergency side and of course it was packed. A man came by me with a sick child, Isabelle had on a mask, but we practically ran away. We were taken back to a traige room within 10 minutes (its protocol to get cancer patients AWAY as soon as someone is available to take them) They said she actually wasn't dehydrated, which was amazing. They opened her port and hooked her up with an IV. They admitted us to observe her since its hard to hydrate while sleeping. They moved us to the Oncology Unit to stay the night. Right before they came to get us, Isabelle pooped through all over the bed. They said we can leave tomorrow if everything looks good. I'm very tired, but at least my princess is sleeping. There is only one bed in this room, which sucks for me. I'm just glad we're at the hospital and theres around the clock help and shes keeping hydrated.

Making it through another day

Today wasn't the best day ever. She spent a lot of the day sleeping and laying around. I gave her a bath and Isabelle helped hold a wash cloth over her port, so it didn't get wet. After her bath she was in a good enough mood that she picked out an outfit to wear. It didn't take her long to go back into her worn out mood. My parents bought the girls a swing set, so we can have one in the backyard. That is good because we aren't going to be able to take her anywhere for a long time. After my dad put it together I was able to convince Isabelle to go outside and check it out. She was too weak to walk, so we carried her and Sabrina. Sabrina loved it and was running all over the place. Isabelle really liked the swing that was shaped like a saucer, so she could just lay on it. We were out there for a good 15 minutes before she was too exhausted and wanted to go back inside to lay down. 15 minutes of play is better than nothing.

Around 6pm Isabelle came down with a case of the runs. It was so bad that she pooped herself 4 times. I went ahead and put a pull up on her because it was so bad she just couldn't control it. She was crying because her butt was so raw it was bleeding. I put her prescriped butt cream on her, but it didn't seem to do much. I spoke to the doctor today and they said there is nothing that they can give her for it. She goes in tomorrow for more chemo at 1:15 in the afternoon.

Her Counts last night : Red blood cells -8.7
                                   Platelets - 119
                                   ANC (total white blood cell count) - 73.8 ( under 500 is considered neutraphenic)
Her RBC have gone down and her ANC has gone down since Tues. I'm not sure if they'll do a transfusion on her tomorrow.

UPDATE on ER

The doctor came in and said her counts were really low. She did speak to our oncologist and she said that we are reliable enough to send home with antibiotics for now. They said if she gets worse than to definitely come back in, but we need to call the doctor to talk to her tomorrow. They also said that if the cultures come back positive for an infection at least she'll already be getting the antibiotics. (She has an appointment on Friday, so she's getting seen again) They would be doing the same thing here in the hospital as we would be doing at home and theres less risk of her getting sick at home. So thats good news and hopefully the culture comes back negative.

Trip to the ER

Isabelle was still lethargic today. We traveled around trying to find a recliner for Isabelle that would be comfortable for her since she has just wanted to lay around on the couch all day. When we got home my dad said that she had been very lethargic and just wanted him to hold her. We called the doctor and she said that we should take her to the ER because the steroids that she is on could be hiding an infection. I'm pretty annoyed because when we were at the clinic yesterday I mentioned how lethargic she was and they brushed it off and didn't do any kind of culture.
They said normally the wouldn't have to wait for a blood culture because they could just check her white blood cells and see if they are going up. In her case its different because the chemo is killing her cells, they are supposed to go up and rebuild. So there is no way to tell without the culture. Right now we are in the ER in a room, surrounded by sick people. They said if her blood count is high enough we don't have to stay, but we're already positive its really low because they just checked her blood yesterday and it was really low. Once they confirm that it is very low then they will move us into a room, until then we are sitting in chairs by a bed in triage.

Now its another $125 visit and they're telling us that we need to stay for at least 48 hours until the blood culture comes backs to see if there are any signs of infection. They gave her antibiotics as a precautionary. (Thats $125/day capped off at $750 per stay.) This is going to be our 2nd hospitalization in the past month. (the first one we already capped off) Who knows, maybe they will speak to our Oncologist on the phone and we can go home, but I doubt it. (The doctor in the ER doesn't specialize in oncology, but will contact the oncologist on call) Hopefully she doesn't have an infection and this is all precautionary.

The oncologist is our blood cancer doctor.

First day at the clinic

Today hasn't been the best day. We were a half an hour late to the clinic appointment thanks to traffic going towards DC. Isabelle was lethargic and cranky ALL day. The first thing they did was do a finger stick to check her blood counts. She didn't need a blood tranfusion, but she did need another platelet transfusion today. Her white blood cells have gone up to 170 opposed to her 63.7 on the 11th which is great. With that being said, her chemo on Friday will knock the counts for everything back down. She is still considered neutropenic because it is under 500.

By the time they came in for the platelet transfusion, the numbing cream had worn off and they didn't realize that her port had not been accessed. So we had to put more on and wait. Isabelle did very well when they accessed her port. I held her arms and covered her eyes and she only cried a little bit. (she was scared, it didn't hurt) I don't think I'm going to let her see them do it because it is very upsetting. It looked like they took a sewing needle and just stuck it right into her check. (It was one of those butterfly things which they connected to tubing) From there they transfused her. They had an art therapist there for the kids, some toys, and fish, but all she wanted to do was sleep. She took probably a 5 hour nap today and just layed around. I was glad when we finally got to leave and come home.

The doctor had good news for us. The cancer hasn't spread to her brain or spine. She still has a long way to go since its going to take at least 2.5 years to treat her. Hopefully tomorrow she will have a good day and want to play around a little bit. She goes back Friday for more chemo. It took us 1.5 hours to get there this morning because of the traffic. The drive is grueling. Everything is stressful and we are all exhausted.

4th day home

She was feeling pretty good today and had quite a few spirts of energy today. The steroid side effects are kicking in and she ate a lot today. Tomorrow morning we have a long day at the clinic. I'm very nervous about how tomorrow will go. They said expect to stay there all day. My dad is going to watch Sabrina for us while we go bright and early.

We had to take Sabrina to the doctor today because she pulled her elbow out. The doctor put it back in with no problem and shes using it just fine now. The doctor said that we will have to watch it because kids who pull their elbows out of sockets can easily do it again. If it happends again then they will have to put a cast on it, so it can heal. At least that is all that has happened.

 I wanted to thank everyone who has helped us out and offered to help it def. means a lot. There doesn't seem to be enough time in the day,  we are very grateful.

Insurance is already sending us stuff and we just left the hospital Friday. Going to apply for this financial assistance with NCCS when I get a chance. So many bills coming our way between hospitalization, surgery, all kinds of specialists (cardiologist, radiologist ect.), outpatient visits (we are going there at least twice a week), and "procedure" costs. Thank goodness we have blue cross and blue shields. I know just with the past 2 weeks its going to be around $2000 rough estimate. Thats great seeing how our hospitalization copay is capped at $750 per hospitalization.

Isabelle is allowed to play outside if the temperature is 60 or higher. (not at the park or anywhere there is people) If shes feeling well, Wed. and Thurs. are supposed to be nice days and we wanted to take her out for a stroll in her step 2 buggy. Friday shes not going to feel well after her "procedure" and chemo so I really want to take advantage if she is feeling good.

Last night I was able to give her an actual shower because the holes in her back are closed. Her back has little holes and bruises everywhere. She also has red marks, where the bandages have ripped off her skin. We tried loosing the bandages with alcohol wipes like the nurses said, but it still left marks.

First whole day home

Today was a little better as far as giving her medicine. It didn't feel so hectic, just a lot of pill crushing and mixing. I have a list of the meds shes supposed to get in the morning. As I draw it up, Abel gives it to her, and I cross it off the list. All day she was exhausted with almost no activity level other than going to the bathroom and eating. (At least shes eating) She took a mid-day nap around the same time as Sabrina and I was able to run to the store to pick up some thing. Around 5:30ish she picked up a little bit of energy and played with some stamps and walked around a little bit. It was nice to see my princess acting like herself. Most of the day shes been so fussy and seems miserable most of the day. I wish she felt better.

Michelle stopped by today which was nice to see someone in the outside world. As soon as she left we gave Isabelle her meds. When we were brushing her teeth and giving her mouth meds she threw up all over Abel and all over the bathroom. My dad and I gloved up as my mom took Sabrina upstairs. Abel jumped into the shower quickly to rinse off. (Not supposed to get chemo on our skin) My dad took her clothes off and wiped her body off. She was crying the whole time. I wanted to give her a bath, but her wound from the spinal tap isn't healed. It was still in her hair so after Abel got out of the shower he helped hold her over the tub so I could just get her hair. Her hair is really dry and is starting to "shed" a little more than normal. She was very upset that she threw up and asked me, "mommy what happened to me." Was a little sad, but I turned it into a funny thing that she threw up on daddy, which worked.

I can't wait until she feels better and her energy picks up. She just wants to lay down all day and have me lay with her. I'm just lucky that she is taking everything, so much better than a lot of other kids. Even though she is doing really good considering, it is so hard to see her falling apart.

Medicines we are giving her:

• Sulfa-5 ml 2X a day for pneumonia prevention (only on Saturday and Sundays)
• Zofran- 2.5 ml every 4-6 hrs. for nausia
• Tylenol #3 (with codine)- 5ml every 6 hours as needed
• Miralax- 8.5 grams as needed for constipation (caused by chemo)
• Pepcid- 1 ml 2X a day for a week while on Dex
• Dexamethasone aka Dex- 3.5 mg in the morning and 3 mg in the evening (steroid)
• Nystatin- 4 ml every 6 hours in mouth to prevent thrush/sores
• Lidocaine- numbing cream that I have to apply to her port an hour before we go to the clinic so they can poke it without it hurting her

Some pictures

Day 8

She went in today for her procedure and she did very well. It was a little upsetting because when she was sedated her eyes were still open and blinking. They ushered us out of the room and brought us back in after about 20 minutes. They pulled fluid from the spine, took some marrow, and injected the chemo. They warned us that when she started to "come to" that she may twitch and kick around, but its a dream type state. I nearly had a heart attack when the monitor said no breath recorded, but it said that because they took the breathing thing out of her nose. Her heart rate was very low before and after the procedure so they had to give her meds to pick it back up. She had to have an EKG and see a cardiologist to check her heart before we could go home. It all checked out ok.

It is so weird to be home right now. Shes getting about 7 medicines a day which is a bit overwhelming. I felt a lot of anxiety on the way home, but now that I'm home I'm feeling better. The best way to deal with this is head on because there is never going to be a right time to face this. The Christine's paid for my dogs to get groomed which we are very grateful for. They look amazing. (We wanted them cleaned up so they don't bring too much stuff from there feet and we were'nt going to have time to do it ourselves.) Isabelle's appointment on Tuesday is at 9 am and they said expect to stay there all day.

Isabelle fell asleep in the car on the way home, but when she woke up she was crying. She stopped crying when she saw our cat and said SPOOKY!! She got off the couch and ran to the cat and pet her for a while. She was so excited to see the dogs too. She was like I want to sleep with Max and Coconut. So cute!

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.