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.