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Maintenance Phase

We started the maintenance phase on the 14th. It began with a spinal and some Vin-Cristine. Once again her back was pretty much butchered, but that is the way it has been the past 6 times. She is under a light anesthetic and they problems getting her body to relax enough to gain access to the spine. Each spinal is filled with screams, tears, and stress now. The only consolation is that Isabelle doesn't remember the ordeal at all. She will just instantly snap into reality and doesn't know why she is even crying.

At the begining of this phase Isabelle was on steroids the first 5 days. Isabelle + steroids = a very angry, hungry girl. She acts so different when she is on these medicines. The good thing is now we only have to go to the clinic once a month. Every night for the next 2 years she has to take 6 MP chemo pill. Has to be given at least an hour after eating and you can't eat for at least an hour after you take the pill as well. The later it is given the more effective it is. She also gets 5 pills of methotrexate every Tuesday. (That is a type of chemo as well.)

Isabelle has had many highs and lows with this phase so far. Some days she gets very tired, other days she is fine. She also has lots of mood swings and emotional outbursts. It is hard to tell at times if she is misbehaving because she is used to getting special treatment or if it is the medicine at times. She totally tries to use it to her advantage as well. There are obvious limits and boundaries that she knows she can not cross when she isn't feeling well, but there is a lot of gray area. For example, she gets nautious and throws up from the chemo. Sometimes she will say something makes her sick, but she just doesn't like it. Lots of gray area and I feel like I'm always guessing. I have to put my foot down a lot of times with other people.  People will just give her things like candy without thinking to ask if she can have it.

Anyways, 2 years of this maintenance phase and after that she is considered cured if in 5 years she doesn't relapse. She goes in next month for a spinal and more Vin-Cristine. From here on out, we have no restrictions. If she has a fever then we have to go to the hospital/clinic everyday that she has it for antibiotics, but she only has to be admitted if her counts are under 500. General rule, stay away from sick people!!

Past couple of months

It has been a while since I posted anything about Isabelle. We completed her hospital stays and they were brutal. She was accidently overdosed on a drug called adovan. It was a "safe" dose, but caused her to collapse, urinate everywhere, and have hallucinations. I had to hold her down because she couldn't stand up and she thought I was some kind of monster, so she fought me for about 2 hours. She then started to settle down, but had hallucinations for about 12 hours total. The mistake was not caught by the pharmacist or the nurse. The dose she was given was a dose they would give someone they were trying to anesthetize. (They gave her the drug for nausia.) I also gave birth while in the hospital with Isabelle which was pretty convenient. In one of our "off" weeks I had to take my son, who was 2 weeks old at the time, to the same hospital for a pylorectomy. He had whats called pyloric stenosis. That is when the pyloric muscle thickens and doesn't allow food to pass from the stomach to the intestines. It was a very simple procedure and he recovered quickly.

The next phase we began had a series of going to the clinic 4 days a week. It was a real pain, but we made it through that too. Right before we were supposed to start the maintenance phase we had a big scare. They thought Isabelle relapsed because her blast count in her blood started to elevate. (They noticed this because we were admitted to the hospital because she had a fever) Luckily all was ok and they did a bone marrow to double check. We were in the hospital 10 days just waiting for her white blood cells to build back up. It was a pretty brutal stay, filled with emotional turmoil as we waited to see if the leukemia was back. Everyone was expecting the worst, so we were shocked that she didn't relapse. We were very grateful as well. We ended up in the hospital the day we were supposed to move and we had to reschedule her birthday party.

Use Physical Fitness to Improve Quality of Life with Cancer by David Haas

High Dose Methatrexate Hospitalizations

This next phase of Isabelle's treatment she has to be hospitalized. Since the last week of June, she has been going to the hospital every other week for about a week at a time to get treatment.

This Monday Isabelle had a procedure scheduled at 1030 am. I was about 2 miles from the clinic when I got pulled over and given a ticket for having windows that were tinted too dark. What the officer said she could "do for me" was drop all the charges if I corrected the problem by the time I was scheduled to go to court. I will still have to pay court fees that will probably be higher than the ticket anyway so it won't be worth it. On top of that I don't have time for it. I don't understand why they wouldn't tell us during our VA safety inspection that our tints were illegal. A warning would have been nice, but it was the start to a crappy day.

Isabelle's procedure did not start until 12:20. The procedure went horribly. The doctor could not get the needle into her spine because her body was too tense. To top it off, Isabelle felt it and was screaming her head off. The doctor gave her more of her "sleepy" meds, but it didn't seem to help. The nurse also curled Isabelle's knees into her chest to try to help make her back relax so that the doctor could get the needle in. She must have stuck her about 7 different times and they changed needles. I had to help hold Isabelles arms down, so that she couldn't touch her back and contaminate it. Finally they got the chemo in her spine, with what seemed like hours but only was about 10 minutes. She screamed and cried for about 20 minutes after the procedure was over, but did not seem to remember any of it once she recovered.

After her horrid procedure she recieved an IV drip of medicine that prevents prophylaxis. After her drip she then had a reaction to it and started itching everywhere. They gave her benedryl to counteract the reaction and she did well with it. Then she received VinChristine through an IV push. When we were done with that we headed over to the hospital to be admitted. She didn't get her high dose meth. chemo started until almost midnight.

The way the high dose methatrexate works is Isabelle has to be prehydrated for about 6 hours. Then she gets this chemo for 24 hours. After the 24 hours is up she is then given more fluids. She is not allowed to leave until she has less than .1 % of chemo in her blood. This can take up to a week for her body to clear it. She has been averaging about 4-5 days to clear the chemo.

7/26/2011 - Isabelle has had extreme back pain all day. At one point when I put her on the potty, she could not even hold herself up. It was very complicated trying to wipe her/pull up her clothes while she couldn't even stand. She has been getting tylenol and codeine between it to help control the pain. She has had pain due to the procedure that she had yesterday. It was nice that the art therapist came by today to do some crafts with Isabelle while she was in bed. Abel came by this evening and is staying the night with her on his 2 days off, so I can be home with the new baby. They are going to test Isabelles blood at midnight to see where her chemo levels are after it is done running.

6/12/2011 Hosptialized once again

6/11/2011 - Isabelle was not feeling well and had a fever. The doctor on call said to bring her to the er and they would give her some antibiotics and check her blood counts. Since her white blood counts were 1500 on Tuesday and they seemingly were going up, they expected her to be in and out. Abel took her since she was in a good mood and it was supposed to be a quick thing. When he got to the er side they checked her blood counts and started her on the antibiotics. As it turns out, her white blood count dropped to 50, so she had to be admitted.
           While in the er, it took them 2 tries to access her port. (She felt it and it hurt, normally she doesn't feel a thing) She became so distraught that she threw up all over Abel and the nurse. The nurse got Abel some scrubs to wear. The physician wanted to give Isabelle medicine for the nausiousness that is NOT supposed to be taken with the nausious medicine that shes on. Abel let him know that she couldn't take it and why. Being on the er side is so annoying because they don't specialize in Isabelle's condition, so they really don't know what to do with her. They had it on her med chart what she was taking and they should have known that it couldn't be taken with that other medicine. If Abel hadn't spoken up, they would have possibly caused her damage.
             They were able to get Abel a room with 2 beds on the oncology side which was nice. Isabelle was due for tylenol while Abel was waiting for me to get there so he had requested them to give her some. By the time I had gotten there, 2 hours later, they still did not have the tylenol. The resident doctor came over to speak with us and she said she would get the medicine for us. Meanwhile, Isabelle has a fever and feels HORRIBLE. Another hour goes by and I call the nurse. It is a new nurse, apparently they did a shift change and no one told our new nurse that Isabelle was due for tylenol. The new nurse then tells me that they are out and that it will take about a half an hour to get it because she has to get it from the other side of the hosptial.
             They gave Isabelle an iv drip because she has not been eating. She ate one slice of bread all day and one cup of milk. She had an accident at like 2 am and she had to be wiped down, linen changed, and we put a diaper on her.
6/13/2011 -Isabelle woke up in a great mood. Her favorite nurse Amil was woke her up by taking her blood pressure. When he asked if there was anything he could get her she said, "yes, a toy." She was very happy to see him. Isabelles WBC dropped down to 30, but she hasn't had a fever since the night before. They told us that if her WBCs show that they are going up and she has no fever for 48 hours then she can go home. Sabrina is home with Abel and is sick now. That sucks because that means they can't come and visit us. Isabelle ate one piece of bread today and drank a cup of milk. They are going to start her on an appetite stimulant since she has not been able to eat well for a while. They said it will take a week for it to go into effect. She was sleeping on her stomach and when she shifted positions she accidently ripped her port out. She started screaming and grabbing her chest, then she yelled I've got to go potty. I then had to call for the nurse and drop her on the potty. After she was done the nurse's quickly took it out, cleaned it, and hooked a new one in. It hurt her because she didn't have time to be numbed : ( but at least it was quick. She is allowed to leave the room until tomorrow because she's quarentined due to the fever she had. The art therapist came by and played with Isabelle for a while, which she enjoyed. I have been enjoying the snacks that Michelle Christine brought me. It was nice to have a visitor today. At least I've been sleeping well. Isabelle made me switch beds because there are special wall stickers on the walls by the bed she was using. They are boy stickers and she didn't want to sleep on the boy side. I am going to have to figure out how to get some wall stickers for the hospital when she comes here to stay.

6/14/200 - Isabelles WBC has dropped down to 10.8. They did a special test called an IGG on her blood and she has a low protein count in her blood. (The protein isn't a protein that you get from nutrition, it apparently helps your blood build white blood cells. Her being low on this protein would explain why her counts keep dropping. It is considered a blood bi-product.) They are going to give her a transfusion of this special protein through an iv. The resident physician told me a lot of false information, which was aggravating. I have not spoken with the doctor that is here yet to find out what is going on. We will be here for another 48 hours at least. Isabelle has eaten  3 pieces of bread so far and hopefully will eat later. The cleaning lady came in and was cleaning up our room. When she got to mopping the dirty floors, she found an earring back. Instead of asking if it was ours, she picked it up from the dirty, wet pile with her dirty cleaning gloves, and set it on the table where we set our food trays. That is so disgusting. This room obviously has not been cleaned well enough for an immune compromised child to stay in and people like that are exactly why. I hate hospitals.

6/7/2011 - 6/11/2011

6/7/2011- Isabelle had an early appointment just in case she needed a transfusion. It took 2 hours before we were even seen!! All of her counts looked good, so she didn't need any transfusions. Her white blood count was in the normal range, so she has no restrictions either. She received a chemo push of vinchristine and had a doctor check up. Next week we start a new phase of the treatment. She has to go to the clinic at 8:30 am to get a spinal tap and vinchristine chemo push. After that we have to wait for a room at the hospital to open up because she will have to be hospitalized 4-7 days. At the hospital she will receive chemo through IV for 24 hours. Then she will have to be observed and hydrated to try to push it out of her system, which is why the 4-7 day hospitalization. This is to prevent kidney and liver failure. The name of this chemo is called high dose methrotrexate. She will receive chemo pills every day for the next 56 days as well. After the hospital stay she will go one day the following week to check on her blood. The week after that she will have to be hospitalized again. She will be hospitalized 4-7 days every other week for about 2 months. (This is including after the new baby is born.)

6/8-6/11 Its been a really rough week for Isabelle as far as appetite. Everything has been making her sick, even with all the meds she's on for the nausia. I've been syringing her pediasure, which makes her sick and spoon feeding her rice. I know shes tired of throwing up and she doesn't want to try eating anything.

Friday the 20th-25th

Friday Abel took Isabelle to the clinic around 3. When he got there they told him that she needed a blood transfusion and that it was too late to get it done at the clinic. They were going to send her to the hospital to get it done, but when they called over the oncology unit was full and didn't have room. They sent him home and told him that we need to watch for signs of her "crashing" and they made an appointment to come back on Monday. They said if she showed symptoms or her blood dropping seemed to get worse to go ahead and bring her to the emergency room. (That in itself is a risk since her immune system is completely compromised right now.) Luckily she made it to Monday without any problems, but it was a scary thought to know that she needed a transfusion and they just didn't have room to accomodate us safely.

Monday- Isabelle's appointment was nice and early to get the blood transfusion. When they accessed her port she put up a fuss. I guess as good as shes been, shes decided that shes had enough. The blood transfusion too a couple hours and she made a friend at the clinic. (the little girl doesn't have cancer, she has a platelet disorder and only has to come once every 2 weeks) She had a lot of fun playing with the princess toys on the train table. The nurse's asked if we could go ahead and get the chemo, so we would only have to go to the clinic 4 times this week instead of 5. The doctor said that would be fine, which was great news to me. She then got her chemo and we were able to leave.


Tues-Wed. - All she had done was her chemo push and there was no throwing up, Yay!! She also insisted on going in her dress-up Rapunzel outfit. She even wore the slippers, which I had to put sandals over so she wouldn't get them dirty. Once we were there, we had to go around the whole place to show EVERYONE her outfit. If people did not look at her, she would grab their attention so that they could tell her how beautiful she looked. It was so cute. She took her sandals off in the clinic so she could show them off. 
She has a crush on this Asian man at the front counter named Jay. She is constantly flirting with him and she told him that he was sooooo handsome! It was so cute and funny. Of course everyone laughed and she kept saying it.

Quick clinic days 5/18-19

Past 2 days have been very hectic. Isabelle has been very sick the past couple days. Yesterday she threw up probably about 6-7 times, even with her medicine for nausia. She barely ate anything either. On the way to the clinic she threw up 3 different times where we had to pull over, change her clothes, and wipe her down. (We of course had to wear gloves and handle with care) When we arrived at the clinic it took longer than expected because we saw a nurse practitioner as well as the chemo. Isabelles weight has dropped again, but shes not the lowest that shes been, so they're not overly concerned. (They do want the nausia to stop though. ) She prescribed us 2 more medicines for nausia to try instead. One of them causes drowsiness which I'm not thrilled about since shes been very tired. She slept about 80% of yesterday, but she was also not feeling well. For her evening chemo she spit it all out, all over the place. Abel had to make more, we changed her clothes, linen, and wiped her down. (Had to wear gloves because of the toxicity) So exhausting.

Today Isabelle was worn out and did not eat much in the early day. After her first dose of her new nausia medicine, her appetite picked up. (this is the one of the 2 that doesn't cause drowsiness) When we went to the clinic, she threw up in the car, but she made it in the bag! Her chemo push actually went very quickly today, thank goodness! She did throw up the little bit of food she ate earlier in the day, but we left after only 20 minutes! We even beat traffic!! She ate a good sized dinner, which was nice too. Just when I thought the day was going well,  Abel went to give her the nightly chemo and she spit it out everywhere. So it was pretty much a repeat of the night before. So tired, but tomorrow is the last day of clinic chemo until Tuesday!! Hopefully this new nausia medicine will make my baby feel better.

5/17/2011

So Isabelle's appointment was today at 8:45 am today. We arrived they told us that she wasn't getting a procedure done today, they wrote it down wrong. The first chemo she received today was the cytoxin. Before she could get that she had to get an hour drip of IV fluids plus a "good" urine sample. Her cytoxin drip only took a half an hour, but its required that after the cytoxin, she needs 2-4 hours of after hydration. That is mainly because it is really hard on the bladder. Then she had to get her ARAC chemo in tube push. (thats the one that gave her the fevers) We were home by 4, which was nice and earlier than expected. She had a fun day at the clinic today playing with the nurses.

Isabelle has to get M6P for the next 2 weeks. (pill chemo) When Abel went to give it to her this evening she threw it up all over the place. He then had to get her another one and he had to put on his MOP gear pretty much to clean it up. Tomorrow and Thurs. her appts. are at 3 and its just a "quick" chemo push in her tube. Friday her appt. is at 2:30. She is basically getting her ARAC push and having her tube accessed.

5/10/2011 procedure

Isabelle's procedure was scheduled at 10:15 and did not get started until 12.  The good thing was everything went smoothly and she was ready to leave at 1:30. She is scheduled to start the 7 day a week chemo next week, (4 of the days we go to the clinic) but her ANC blood count will probably be too low and we will probably be delayed for a week or 2. Her ANC was 100 today, so shes back on all her restrictions as far as going out/eating. Her red blood count was also low, but the doctor said it should be going back up now. It was nice to have a quick day, but sucks that we are on restrictions again.
 Numbing cream on her back, getting ready for her procedure.
Waiting for the procedure to begin.

Procedure 5/3/2011

Well Isabelle's procedure was scheduled for 12 in the afternoon, so we woke her up at 4 am to eat and drink some milk. (No food 8 hours prior to procedure) Then at 7:30 she woke up and had some water. (No water 4 hours prior to a procedure) The good thing was she didn't start complaining about being hungry until 11 am. We arrived at the clinic right on time and they didn't even start her procedure until almost 2. I was very aggravated at how long it took for them to get started, our appointment was already late.

When they started the procedure, everything was going pretty well. Isabelle was actually sleepier than she has been in the past and seemed a lot more relaxed. The nurse was there to make sure Isabelle didn't move at all during the procedure. (Isabelle lays on her side as the doctor does the injections into her spine) Well out of no where. as the doctor sticks her in the back, Isabelle turns her upper body to look at her doctor. That didn't go very well seeing as that made the doctor pretty much stab her in the back. Isabelle immidiatly started screaming out in pain. The nurse had gained control again right away(she had let her guard down) and was like I'm so sorry Dr. I'm so sorry. I was really nervous and ran over to the table to comfort Isabelle. I was worried because it wasn't like a shot in the muscle or under the skin, we're talking about SPINE. Everything was fine, thank goodness, but I just kept thinking omg shes going to be paralyzed. The doctor tried to stick Isabelle again and she was still screaming. Dr. Chao had to stop and get a new needle because it apparently wasn't going in right (darn thing was probably dull). Then they finally got everything in ok and Isabelle started saying that what they were doing tickled her. (The were cleaning the site.) She luckily didn't remember any of the procedure.

20 minutes later she was eating and we moved to the play area. She also recieved a chemo that goes in an IV drip and it takes an hour. We then had to wait another hour after to make sure she didn't have any side effects from it. We did not leave the clinic until almost 5 and got home at 7 in the evening with traffic. It was such a long day. She has to come back Thursday for another blood transfusion and a platelet transfusion. Her white blood count is still pretty good. Hopefully she feels ok tomorrow and we can do something fun.

The first picture is the car ride to the clinic and the second picture is her waiting patiently for the doctor to come into the procedure room and do the procedure.
She was so hungry that she just wanted to look at her lunch and hold it, while waiting for the doctor.

 Still waiting for the doctor
 After the procedure getting her IV chemo while watching a movie on the portable dvd player that they have at the clinic. This is called the infusion area and there are lots of little cubbie type areas for all the patients.

Hospital stay #3

Well Isabelle has been having fever, head aches, body aches, fatigue, and nausia for the past few days. We originally thought the head aches were from her RBC being so low, which is why they transfused her earlier than they were going to. (red blood count) Yesterday on the way to the clinic, she threw up all over herself. Abel did not have a change of clothes, wipes, or anything. He stopped at Walgreens and bought wipes and an extra large tshirt to put her in while he cleaned up the mess. He broke our umbrella stroller because when he went to leave he backed up and ran over it, lol. I wish I was there to see it. At the clinic Abel said Isabelle seemed to be feeling fine, no fever or anything. They needed to give her a second dose of antibiotics since she had been having a fever. (Just as a precaution) Abel got home at 1 and left for work around 1:30.

As soon as he left Isabelle was in quite a bit of head pain. She just wanted to lay down and whenever she moved she would cry and grab her head in pain. I checked her temp and there was no fever. I gave her some tylenol and an hour later I checked her temp. and she had a low-grade fever. The tylenol also did not seem to do anything for the pain because she was still having a lot of it. I called the doctor and she told me that I should take her to the ER as a precaution since she was having, so much head pain and fever. Abel came home from work to help me. I got to the hospital around 7, Isabelle threw up in the car, so I had to change her. She was having a hard time standing because her legs were in pain, her head was in pain, and she was wobbly. They put us back in the childrens waiting area, which she is NOT supposed to be in. The nurse was like can you guys wait here for a couple minutes. I was like no its not really ok, I don't want her in here. The nurse ran out and they moved everyone around in the ER to get us a room by ourselves. I don't know how well the room was cleaned with all the hassle, but I can only do so much. The nurse we had was an idiot and was driving me crazy. When it was time for Isabelle to get her night chemo the nurse just squirted it back into her throat and she immidiatly threw up. (We had to give it to her again, we waited a half an hour)

The doctor on the ER side said they spoke with the oncology doctor on call and they wanted to keep us overnight for observation since she had been throwing up. The throwing up in the ER was completely the dumb nurses fault. She did have a fever all night. It got up to 102.3 and thats with her being pumped with tylenol every 4 hours. We were moved at around 11 to the oncology side and Isabelle had to be woken up for height, weight, and a bunch of other things that they were supposed to do while we were down in the ER, but didn't. She cried the whole time until her special male nurse Amil came in to do blood pressure. As soon as she saw him, she started getting giggly. He asked her if he could take her bp on her arm and she giggled, "no you have to do it on my leg." She then put the sheet over her legs and was like, "you can't find my leg, you can't find my leg, giggling." When he put it on her she started giggling that it tickled. It was sooo funny how she went from being dead tired and cranky to flirting.

This morning she woke up with a low-grade fever of 100.3. About 10 am she started feeling really good and she started running around. When the dr on call cal in, Dr. Chang, she practically sat on his knee and was telling him what he needed to check on her. He said she looked good to go and that it was probably just a reaction from the ARAC chemo. With cancer patients they have to always assume the worse and they gave her another dose of antibiotics before we were allowed to leave. It took forever to discharge her and as soon as we got home, around 2, she wasn't feeling good again. I gave her more tylenol. They said call if she gets a fever again because I may have to bring her back. We will see how the night goes.

4/28/2011 Fever

Today Isabelle woke up with a fever of 100.6. We called the clinic and they told us to bring her in as soon as we could. They drew up a blood culture, checked her blood counts, and gave her some tylenol. Her red blood count was low as they already knew, so they went ahead and gave her a transfusion. They decided to do this today instead of waiting until Friday as planned because she was experiencing the symptoms of having low red blood counts. (fatigue, crankiness, and headaches) With every patient that has a fever in the clinic they give antibiotics 2 days in a row, so they gave her some this morning. Her white blood count was 6700 which is very high. (could be her body fighting off an infection, allergies, a virus, or pretty much anything)

Side effects from her push chemo are flu-like symptoms and she is getting a very high dose. She had a fever, her body was aching, she has a rash, and she was fatigued. (all side effects) We were at the clinic all day and afternoon. Abel had to call out of work and by the time we got home it was dinner time. Isabelle was so exhausted she fell asleep and we had to wake her up to eat. She has barely eaten anything all day because she has been feeling so yucky. She had a fever of 101.4 at 6 pm. This morning she was also feeling very nautios and threw up a few times.

Isabelle has an appointment at 9:15 am tomorrow for more chemo, she needs a second dose of antibiotics (it is given IV over 30 mins), and then they will deaccess her port. Hopefully she will feel better tomorrow. It has been an exhausting day for everyone.

4/26/2011 procedure

Isabelle's procedure was at 10:30 this morning which sucked because she could not eat or drink for 8 hours prior. (Which for her she went to sleep at 8pm) I really need to get her more cds for the car trip because she only has 2 cds that she likes and it is such a long drive. (they're like Disney mix cds and she only likes a handful of the songs on there) As hungry and thirsty as she was today she was in a great mood. They were late doing the procedure and it didn't even start until 11:30. She was talking the whole time it was going on, even under the anesthesia. I guess that is just going to be the normal for her.

 Her white blood count actually went up to 2700, which they weren't expecting. (which is awesome!) Her red blood cell count is still really low and they are going to do a transfusion on Friday. They are going to try to wait until then because they are "booked." They were telling me if her energy level goes down dramatically and if she starts getting headaches to let them know and they will go ahead and give her one earlier. Since we are going in everyday for the rest of the week, I'm not overly concerned about it. 20 minutes after the procedure was done, she was able to eat and drink. We left at 1, so it was a lot shorter visit than last week. They told me the reason for the longer visit last week was she got an additional chemo last week that she needed to be observed for a while. After this week we get a 2 week break where she will only have to go in Tues. to be put under for chemo. Then they will start on the 4 days a week chemo in the clinic again.

When it was time to go, Isabelle actually did not want to leave the clinic. She wanted to go and play. Instead we went to the Disney store and she picked out a doll there. She is in love with Mulan and Tangled right now. Shang, Mulan's bf, is her favorite right now. She picked him out at the Disney store and when she got home she was sad because she didn't have Shangs gf Mulan, lol. I didn't even think about getting her too, so I guess that will be another day that we get her.

Her appointment is at 3 tomorrow, 3 Thursday, 9:15 Friday and then 12 on Tuesday. The Tuesday appointment sucks because shes getting a procedure done and she will have to spend half of the day with nothing to eat. Brutal.  Overall she is doing great! She threw up twice this morning, but thats really the only nausia she has had this entire week. She had so much fun during Easter and it was nice that her counts were high enough that she could actually participate in different activities.

This is the area at the back of the clinic where the art therapist comes in and plays with the kids.

This is where the toys are. This picture was taken last Friday.

Her hair is growing back, but the doctor said that it will fall out still because of the VinCristine chemo that she is going to continue to get.

This was her waiting for the doctor to come in to do the procedure. She was watching Strawberry Shortcake on the tv.

Week 1 over

The past few days of clinic visits have been a hassle. The drive is horrible and the traffic even worse. Isabelle is completely over the chemo that is a push in her tube. The saline that they flush her tube out with before and after they put the chemo in gives her mouth a gross taste and she hates it. Today we saw the doctor and her white blood count is down to 1,800. The doctor said that she can still go out, but to be careful around Mondayish because her counts should be really low by Tuesday. Her red blood count was kind of low and the doctor thinks she will need a transfusion by Tuesday. They gave her an Easter basket at the clinic full of goodies which helped keep her mind off of the gross taste in her mouth. The deaccessed her port and gave her a bandaid.

It took a whole 2 hours to get home from the clinic today because of bumper to bumper traffic coming back from DC. We arrived at the clinic at 12:45 and left at 2:30. We got home about 4:30 which was dinner time. Thank goodness someone had made us food that way we didn't have to waste any money on buying something on the road and trying to feed the girls. The main problem with Isabelles appointments are that they have been in mid-day which leaves no time to go anywhere really while her counts have been up. Not to mention the weather has been rainy and today it was cold. We were able to go to Chuck E Cheese for about an hour before we had to leave to the clinic. Next week she has her procedure appt. on Tues. at 10:30 (which sucks because it is so late and shes not going to be able to eat or drink), Wed. and Thurs her appts. are at 3, and Friday her appt. is at 9:15.

First day of Consolidation phase

Our appointment was rescheduled from Friday to Tuesday because there is a shortage of chemotherapy drugs nation-wide. So today we our appointment was at 8:30 am. When we got there they accessed her port and checked her blood counts. Her white blood cell counts are at 2,570!!! That is a normal range, so the doctor said that she can go pretty much anywhere and no special restrictions until Friday! (thats when they are going to check her counts again.) They went up so much because she's had such a "big" break from the chemo. I'm so glad that she gets to see the Easter bun!! Hopefully it will be nice weather so we can actually go to the park with other kids! The doctor said by next Tuesday her blood counts will be on the way back down again from the chemo and she will be on restrictions again.

Her procedure went well. It was very different from the past procedures in that I was in the room with her the whole time, it was done at the clinic, and different anethesia (fenanyl and versed ,one is a pain med. that causes drowsiness and the other is the sedative)They told me that most kids go right to sleep. Isabelle laid on her side while they put chemo in her spine, but chit chatted the whole time. During the whole procedure she did not stop talking once, her eyes were open, but she seemed as though she were seeing double. The doctor said they're not usually, so awake seeming. The procedure took about 15 minutes and was done as she laid on her side. The doctor injected the chemo into her spine, while the nurse made sure Isabelle didn't move around a lot on the other side. 15 minutes after the procedure was complete Isabelle wanted to get up and move around, but they said she had to wait a whole 30 minutes.

After the procedure we went to the back area where Isabelle had to get fluids to hydrate. They then gave her the chemo that is just a push in her tube. We had to stay until 3 because they had to make sure that her kidneys were going to be ok and had to push a certain amount of fluid through her system. They said this was to make sure the stomach lining and kidney lining did not get too irritated by everything. They had to keep track of her urine while we were there, so I kept having to put gloves on and catch it in a cup. At one point there were 7 or 8 doctors/nurses in the hall having a little meeting in the hall. Isabelle noticed it immediatly after she went potty and she had to get their attention. She said, "Excuse me, everyone, I went pee pee and its right here for you!!!!" They all laughed, clapped, and cheered for her as she walked back to where we were sitting so proud. While we were there I don't think she stopped talking once. She was very hyper and at one point I was chasing her around with her IV pole trying to make sure she didn't yank her port line out!! I was glad that she was feeling so well. There was an art therapist there that also helped Isabelle paint and color. She really enjoyed that. A few times at the clinic she put her hat on and became upset. She told me that I can't look at her bald. (We normally take the hats off once we are in the clinic) She doesn't seem comfortable taking her hat off in front of other people who don't have hair loss.

As far as the chemo shortage, the only thing it affects is their protocol. Any chemo that has to be pushed in her port line has to be administered there and can not be given at home. She has to go in Wed. and Thurs. at 3 to get her "push" and Friday at 12:45. Abel still has to giver her the pill chemo everyday.

Mercaptopurine or 6 MP- This is the chemo pill Abel has to give Isabelle at night. It has to be given on an empty stomach, at least 1 or 2 hours after food. We can not give it in citrus or dairy products. She basically has to have the pills crushed in apple juice or water. The most common side effect with this chemo is low blood counts.

Cytarabine or Ara-C - This is given 4 days a week with a little syringe push in her port. Common side effects are nausia, vomiting, loss of appetite, diarrhea, low blood counts 1-3 weeks after treatment, and mouth sores.

We went out to eat to celebrate this evening and when she took her hat off in the restaurant, she put it back on a few minutes later. I don't think she felt comfortable, but I don't think she noticed anyone staring at her. It wasn't so much the adults, but the kids. The adults would kind of look and then immidiatly shy away and tell their kids to stop staring. Isabelle hasn't wanted to wear any wigs because they kind of scare her. Her favorite hat is her strawberry shortcake hat. 

Consolidation Phase

Well today we were supposed to start the consolidation phase of Isabelle's treatment. Her ANC (total white blood cell count) wasn't high enough for them to begin. (They need her at at least 750, she was at 280) They want us to come back next Friday and they think her counts will be fine by then. We pretty much drove to the clinic and drove home. The good thing is that we have a week off! They did explain a little bit about this phase. It is a period of six months, broken into 3, 2 month sections.

In this first 2 month period she will be going under every Friday, as I explained before, to have chemo put into her spine. Abel will give her Cytarabine  "ARAC" chemo every Sat. and Sun. (That is the one that goes in her tubes with a syringe push) Monday we will go to the clinic and she will get deaccessed and more chemo.

She will be on an oral chemo called Mercaptopurine "MP". They are pills that we will have to be crush. She will be on this chemo from the first day that we begin this new phase, till the 15th day. She will then have a break and restart it from day 29-42.

She will get a chemo called Cyclophosphamide "CPM" on day 29. (administered IV at the clinic) On days 15 and 43 she will be getting a chemo called PEG-asparaginase which is also administered IV.

Isabelle has been feeling great with minimal side effects from the chemo right now. One of her eyes has been drooping pretty drastically. The doctor said it was a side-effect of the VinCRISTine chemo that she got 2 weeks ago. The doctor also said that most likely will go away with time. She has also had some leg pain as well, but has been a lot more active.

Her ANC is still very low so there will be no Easter egg hunt at Ida Lee this year,  no mall visit to see the Easter bunny, and no flower festival either. At least she is doing well and thats all that matters.

Remission

Well the doctor called with the results from Fridays biopsy/labs and Isabelle is considered in remission. That means shes right on track to start her 4 days a week chemo. We will still have about 2.5 - 3 years of treatment to get rid of the cancer fully. They say once she hits the 5 year mark since the diagnosis she is considered cured.

Day 29, Hopefully last day of the "Induction" period

Cranky girl, on the way to Fairfax

Well the day started off nice and early. The Horaces' and the Beisels' picked up Sabrina at 6:30 a.m. and watched her for us. We left the house around 7 a.m. to make it to Isabelles 8:45 a.m. appointment at the clinic. From the moment Isabelle woke up at 6 a.m., she started asking for something to eat and drink. I knew right then and there it was going to be a long day. (She couldn't eat or drink until after her procedure) They accessed her port and checked her "levels". Her white blood count was 290, which is the highest it has been. (Normal is 2500) They said from here on out, that her counts should be going up because she is off the steroids now and the kind of chemo she is getting is different.

The doctor went over a game plan, before we went to the hospital for the procedure regarding her chemo. If her results Monday are where they should be then she will start the next phase. This means every Friday for the next 2-3 months she will have to go in for a procedure where she will have to be put under to get chemo in her spine. They will leave her port accessed with a little tube in it and we will have to give her chemo at home through a syringe on Saturday and Sunday. We will also be giving her oral chemo on those days as well.  Monday we will have to take her to the clinic to get chemo and have her port de-accessed. So a total of 4 days a week she will be getting some kind of chemo. From my understanding, these types of chemo don't have as strong of side-effects as the ones that she has been on. They will teach us about them when we go to the clinic next Friday. We will also have get the prescription while we are out there.

Her procedure went very well. She was super cranky. A combination of not sleeping well, being thirsty, and being hungry really had her in a mood. They took forever it seemed like to get her ready and they gave her the anethesia at noon. It was so sad because as she started getting loopy she started screaming, "mommy pick me up, mommy!" I hugged her and spoke to her, but you could tell that she was almost out. It was so sad. They gave her extra medicine, so that she wouldn't throw up after the procedure because she normally throws up a lot from the anesthesia. She woke up and she was cranky, but she was hungry and thirsty. She had no problem holding down the bread and water that we brought for her. They did a spinal tap, took bone marrow, and gave chemo in her spine. She has a big bandaid on her back and it doesn't look as bad as it did last time. Her platelet counts are higher now too, so thats probably why. We were able to leave the hospital around 2:30. Since we've gotten home she ate some rice and she's been laying down because she is wiped out. She is in good spirits though!

Waiting for her to wake up after her procedure.As soon as she woke up she wanted to eat. She was starving!

"No mommy, you can't go potty!!"  This is after we were discharged and we were about to leave.

Shes at 32 pounds right now, which she started at 36. She has gained some weight though because she was lower last week. (I don't remember what it was.) Hopefully everything will continue to go up and we find out Monday how many cancer cells are still in her body.

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!