Well we made it through the first week of this hospital stay. The first week is rough. Getting used to living in the hospital, getting started again... it is very surreal walking these halls again, it feels so much the same, but yet so very different.
Faye had her spinal tap on Tuesday morning, and after that she was feeling pretty good.... good enough to go out and pick a toy.
On Tuesday B.I.G Love comes around with two carts, one with toys for the kids, and the other with snacks and hygiene supplies that might be useful to have. They also drop off a paper that you can fill out with needs or wants up to $25 dollars, and they will go to the store pick it up and bring it to you on Friday.
Everyday she takes a few minutes to decide what to eat for the next day. She already is onto hospital food.... its not good! But she is especially not fond of the scrambled eggs.... "not ordering those again"!
With the start of chemo she also had to start doing mouthwash (supposed to be 4...we can usually get three times a day) and also do some eyedrops every six hours (even during the night) So this is a face of a girl who doesn't love doing either... at first... she now tolerates both (most of the time).
Also on Tuesday she had an old friend come visit. This is Hannah, she had just been diagnosed when Faye was about to go home last time. She was at clinic on Tuesday for a check up....I didn't realize that I had taken a blurry picture until I looked at it much later....
Dad came up to visit and bring a few things.... one of which was the Wii, Mitchell being the most wonderful big brother ever, sacrificed his Wii time to help Faye pass the time.
This is the face of a girl who just bowled a strike!
It wasn't too much after our rousing bowling game that Faye started to feel the effects of the spinal tap. She was complaining about her neck hurting, we put a warm rag on it and I would rub it. She fell asleep for a bit, and then woke up with an incredibly massive headache. She would barely open her eyes, and was crying at the pain it was causing. We tried warm rags, I tried to rub her head, but nothing seemed to help. Finally one of the nurses suggest we give her a bit of caffeine, which could help the headache.
Needless to say it worked a bit, head still hurt, but at least it was tolerable.
Little did we know this was the start of it. At around 3 they started Cytarabine, which caused Faye to throw up and have a fever (got up to 103). So between throwing up and the fever, they had to take blood to do cultures, to make sure she didn't have some sort of infection, and started antibiotics. Tuesday night was a long night.
This is how we spent Wednesday.... feeling crummy! Most of our time for the next little bit was spent like this. She didn't want her picture taken and didn't want to do anything but lay there... and definitely didn't want to eat anything.
Thursday morning we spent with her best friends....a water bottle and a barf bucket!
On Thursdays volunteers bring around pizza. That seemed to perk Faye up when they poked their head in and asked if we wanted some pizza. She looked at me and said "Like the triangle kind?". She asked this because remember the hospital food.... the pizza she had ordered a few days back was this thick circle thing that looked possibly more like a pie than a pizza... I can't really describe it, but I don't blame her for questioning the type of food they bring around here! ;) She only ate one little bite of her cheese pizza she was so excited about and decided she couldn't eat anymore.
Grandpa Joe was in town for work this week.....I think people are going to stop planning trips to visit us because the odds of something going wrong are going up! We were grateful he was here, and he stopped by on Thursday evening because he was flying out on Friday morning. When he came it was the most energy I had seen her have in two days. It was nice to see her perk up for even just a bit!
Soon after Grandpa left we started feeling not so well again.... and went back to hanging out with our best friends and sleeping!
Friday morning we were greeted with a visit from Dr. Thompson. Again, a Dr. from our last time around. Our actual Dr. was out of town when Faye was really sick in one of the rounds of chemo last time, and Dr. Thompson was the one looking over Faye.
One of the things Faye was known for around here was not talking to anyone. It was Dr. Thompson's mission last time to get Faye to talk to him. That was kind of their running thing, that she wouldn't talk to him. But she really did like him, when she would see him she would point him out, but only if he was far enough away to not realize she was acknowledging him. So when he came to visit, he asked Faye, "Do know how many words you have ever said to me?". She smiled and replied with, "Zero". He quickly got really excited and said, "Nope. Now you have said one word to me." She smiled.
It also meant a lot to us that he would come check on us because not only does he not work at this hospital anymore, but his son was in a horrific car accident over this past summer, spent 16 days in a coma and is still in the hospital. We will forever be grateful to Dr. Thompson and what he has done for us.
By Friday afternoon we were feeling good enough to paint a treasure box. Still no eating..... but no more fevers either.
I couldn't get Faye to take a picture without blocking her face..... so I told her that she looked so super cute and that her Dad would probably love to see a picture of her. Works every time... this girl loves her dad! And of course she loves these socks... a good friend of mine sent them to her!
We have been able to Skype with the boys and a few friends.... she gets so excited about skyping, but then when she gets on she gets so shy!
Friends on her Facebook page asked everyone to send her cards.... you can get on the hospital website here and type up a message and send a card to her. Then daily they deliver cards to the patients. People did not disappoint.....
These cards were full of words of encouragement and jokes! She loved reading all of them. She would first go through them to see who they were from, then she would read them out loud, (unless the nurse came in, then she would read them silently to herself). If there was a joke on one she would turn sideways so that I could not see the joke and she would read it to me.
As of today she has received 53 cards!
All of Faye's friends from primary (all the children she attends church with) made this card for her. She has it hanging right below the TV, so she can always see it, right in the front of her room!
Friday was the first of many Blood Transfusions. When they had this hooked up and going into Faye, she asked me, "Why are they taking so much blood out of me?". She has only seen (at least when she can remember) them taking samples of blood. So, of course, she assumed this was the same. I explained to her that people in the world donate and share their blood to help others who are sick, so this is in fact someone else's blood going into her to help her get better.
Holden was a little boy who was in the hospital around when Faye was last time. His Dad told me he is now 4 and doing well, a few scares, but doing good nonetheless. Anyway, Holden's Dad coaches a soccer league and this weekend all the teams played in honor of Faye. I guess they ran through banners that said "Go Faye" and everything. He said he will send me the pictures. He brought some of the boys from the teams to meet Faye! These boys were so cute and nice to take a picture for us. They were all also 2nd graders.
Nick picked this shirt up for Faye this week.... she just happened to pick it out today. It is the perfect shirt for not only this picture..... but also for her situation!
After they left I asked Faye, "Aren't you glad that we got a bath and did your hair before they came?" I was teasing of course. But she said, "Yes, I am glad because that would have been so embarrassing."
She has slowly been getting back her appetite. We started out with goldfish, moved up to milk, peaches and pears. And now on Sunday for lunch she made her own peanut butter and jelly sandwich. And ate the whole thing...minus the crust (she also cut off herself). I told her "my goodness you are getting so big to make your own lunch, what do you need me here for?". She just smiled and let me take these pictures!
So, our first week is in the books! Not that we want to do it again, but we are feeling very fortunate with the way Faye has handled everything. Even through the throwing up and not feeling well, she just did what she needed to do. Sure she put up a few fights, asked to go home a few times.... and wanted her Dad! But, all in all, we are feeling good about things.
Last time when Faye was able to finally get out of her room, and was over the initial symptoms of chemo, she wanted to be out in the hall constantly riding her bike....
She could usually be found riding this bike as fast as she could go, with Mom or Dad following as fast as we could go with her IV pole, so her tubes wouldn't get pulled out! It was important to us to do whatever we could to make her happy....
I don't think that is going to happen this time. She can go out of the room now, but I can barely talk her into just taking a walk around the floor. So, although she may not want to go ride a bike around the floor, the mission is still the same: do whatever we can to make her happy!
We appreciate everything you all are doing to make this all possible. The messages, the help the meals, the support. We could not do this without all of you! Thank you doesn't even seem to be enough. But I hope you all know what each of you mean to us, even if we are not able to tell you all personally.
What the heck is Chemo?
Basically Chemo for dummies.... which is how we understand it! ;)
Now for anyone who might not know....I know all of this can seem confusing... I know before we were thrown into this cancer world we were clueless as to what chemo actually was.... if I had to guess before I would have thought it was some sort of machine you went in, or were hooked up to or something... yep I really had no idea. So here you go I will try and explain what Faye's getting chemo means as well as I can, because we have had quite a few people ask what everything means.
So first of all, Faye has a PICC line, which are tubes, like an IV, that are inserted in her arm and the tubes go up through her arm and just barely into the top of her heart.
So last time, Faye had 4 rounds of Chemo. A round is a group of chemo meds delivered in a specified amount of doses over a certain time frame. Recovery time is included in the round and one round typically lasts 4-6 weeks. This chemo knocks her immune system down to nothing and then it takes a number of days for her immune system to build back up. For Example: The round that she is doing now consists of:
Day 0: AraC (via spinal tap), G-CSF
Days 1-5: AraC, Fludarabine, G-CSF
Days 6-29: Wait for white blood cells to go down and then for them to come back up again.
Day 29: Bone marrow biopsy to see how the Leukemia cells responded to chemo. Decision will be made shortly after about next steps (more cancer chemo or go to marrow transplant).
There are a host of other medicines she takes daily throughout but these are the specific chemo one. Now that we understand what chemo is we describe it as poison they use to try and kill stuff in your body with the hope your body can work normally afterwards.