Monday, November 30, 2009
So today we started with blood counts. And I didn't mention this yesterday, but we were so caught up in our "normalcy" this weekend that we actually forgot to do her bloodwork on Saturday. Yes. We forgot. Funny, huh? I think it is the first time I have forgot something throughout this process, but I did and I felt terrible. So on Sunday we talked to the dr on call and he said, no big deal we could just do it first thing today...otherwise we were gonna head down to the hospital on Sunday. So now I don't feel bad about it, because I saved my daughter a poke and I saved me a bunch of time. Anyway, her ANC today was 2600. Very good! Very strong.
We then waited patiently for three and half hours and Dr Dole did her spinal tap at 12:30. She never falls asleep with the sedation, but she did close her eyes today for a minute or two. She had some confusion, but overall did very very well with the procedure. For some reason, she never has problems when Dr Dole does it. Which is nice. She also got her monthly dose of IV antibiotics (pentamidine) which takes an hour to run through. And she got two chemo pushes (meaning they push it right into her port, no drip bag)...they were Vincristin and Doxurubicin. Doctor said they shouldn't be too bad on her counts..nausea is the main side effect. She will lose her hair again. :( It was just starting to really come in too. I was very proud that she didn't even cry when accessed and just a slight whimper when getting de-accessed. She is just getting to be so brave about it.
She is starting back up on the steriod Decadron. 7 days on, 7 days off, then 7 on again. Let me tell you that this is probably the #1 complaint across the board for most leukemia families. We have not done it since the first 14 days after her diagnosis. These little pills make the kids irritable, hungry, and unable to sleep. They are rough. Kids throw tantrums for no reason. I have heard stories of kids not sleeping for three days straight. These are the pills that made us pack lunches for Ally to eat in the middle of the night. She will wake up to eat meals now. I am hoping that the seven days is easier than 14. And I am glad that my Ally is by nature an even-keeled and pleasant individual. But these things can even make her quite whiny.
More big news: She gain 6 pounds in about 10 days. She is back up close to 70, which they say is her ideal weight for her height. Very happy about that! Still down from the 79 where she started, but better than the meager 63 she was at one point when they told me she fell in the bottom 10% of the population and was not healthy.
The biggest news it this: she is allowed to go back to school. At least for a few weeks. The flu and illness is at a low point right now. The hospital has even changed their visitor policy back to normal (right after we are done with it, of course). They don't think her counts will be super low until late December/January. So we will try it and see how it goes. Even if she just goes a few days a week...a few hours a day...something. It is important. The doctors keep reminding us that life must go on after this over. And you can't pause life completely. She has gotten to be quite lazy in her reading/work, etc. And I think it is time. Hopefully, I am not regretting this decision or dealing with 10 phone calls a day from the school. Worst comes to worse, I am ten minutes from school and I can come get her. And the people at the school will take such good care of her.
So I am letting her sleep a little tomorrow and then taking her in. That's the plan. We'll see.
She has to go back to the hospital on Friday for the PEG leg shots. These are killer. Two super huge shots right in her leg muscles and for this they do NOT sedate her. She knows they are coming and she knows they hurt and it could very well take the two of us to hold her down. And then her legs will hurt for a few days. And they will make her stop eating again. From now until then I will fret about them. They are just like getting your infant vaccinated, but times 10. I do hate them. It is gonna be a rough worry-filled week but we will persevere. We are plenty adept at living with worries around here.
More tomorrow on the big return to school. Please pray it goes okay for her. (and me!)
Sunday, November 29, 2009
- We spent the Thanksgiving Day up at Fox Hill with my Dad. We hung out, swam in the hot tub, made cookies, and tried to help each other pass the day without Mom. It was hard. Very hard. But we made it. We even spent the night up there (all five of us!) and it was fun. All three kids slept in their bunk beds which are attached to their Pa's room. I think he loved it.
- We ate a wonderful dinner at Jerad's office. I believe there were 23 of us there and we all sat at the same table. That was pretty special. My Aunt Connie did most of the organizing, cooking, and my Uncle did ALL of the dishes. We owe them an enormous amount of gratitude for including us and making our day go a little easier. My cousin Kevin was even in charge of getting the crafts for the kids...never thought I would see the day he did that. But he also let Ally paint his toenails green this summer...she brings out the best in everyone!
- We enjoyed the baptism party of our twin nieces Sofie and Abby. We actually traveled the furthest we have been since Miss A got sick. We normally wouldn't have been able to do it, but the break allowed us one more pleasure. We got to see all of Jerad's family, even his sister Amanda who lives in Florida.
- We had our niece Bella stay with us Saturday night. Bella and Ally were born three weeks apart. They have been best friends their entire lives. Bella lives in Columbus, so we haven't gotten to see her much these days. She came down after the baptism, spent the night, and stayed with us for the entire day Sunday. So nice to just see the girls being the girls and enjoying each other.
- We also did a lot of Christmas decorating...more pictures on that another day. We had to take advantage of our "slow" time and try to get ahead of the holidays a bit. I even ordered my Christmas card. Which I may post out here at some point for all my blog friends who I don't even have addresses for!
Our mega-huge table....
This is what I wrote, also on the sidebar of my blog. Someday I will tell the story of the verse, but it is very special to me.
And just like that it is over. We are headed back to the hospital at 9 am tomorrow. To start a new round of chemo that lasts about eight weeks (every week). She will start with a spinal tap. I am not looking forward to this because she can't eat before the procedure...and this girl has been eating every hour all weekend long. Tomorrow she will get the same drugs that they gave her that very first day we found out she had leukemia. I was in a complete daze at that point, so I can't even list them here...but it is almost as if she is starting over. These drugs were hard on her. Very hard. So I will brace myself for what is to come. Maybe I learned something last time (like never ever stop the miralax) that could make this a little easier. I also would like to her to start back to school...we will see what they say. I wish her well as we start on this journey yet again. Praying for her every minute.....
Wednesday, November 25, 2009
If I am being brutally honest, which I try to be, I will admit that deep in my heart I just want Thanksgiving to be over with. Christmas too. I would be good with just fast forwarding to January. But I know I have to do it, for the sake of the kids if nothing else, but also just to cross it off my list. And say I got through it. This is going back to the huge whole in my heart that was created when my mother left us back in March. For 36 years, my mom cooked Thanksgiving dinner. Every single one of them. (a few I spent with Jerad in Junction City, but she still cooked) Growing up, we never went anywhere for Thanksgiving. Never to a Grandma's house or an Aunt's house....we always had Thanksgiving in our own house and it was always cooked by my Mom. Most of the time we also had a few visitors.
Except last year, at the very last minute, we hopped a plane and went to Florida...with my parents and my sister/family. We literally planned it in a few weeks time, knowing that it may very well be the last family vacation we would have with Mom. And it was. And we ordered the dinner from the local Publix store, but we still made a few things. And Mom milled around in the kitchen and got things ready, as she always did. And she set the table with a fancy tablecloth and the best dishes she could find in the condo, again...as she always did. And I distinctly remember sitting on the beach, waiting for our dinner to "reheat", and writing the word "Thankful" in the sand. Imagining what my life would be like in 2009....and imagining what my life would be like without my Mom.
And I was sad then, and I am more sad now. Because here I am in 2009, and now I have even a greater challenge to deal with...as my daughter faces this horrible disease and it threatens her life as well. But I have a fierce stamina in me that knows this time we will beat it. We will.
Just today, I sadly learned about yet another patient at Children's who just relapsed. An ALL patient. I am telling you....everyone is relapsing and it is very worrisome for Jerad and I. We don't imagine ourselves going down that path. I am very good at blocking that whole scenario out of my head. Yea, when you guys say how strong I am, well, NO I am not really strong, but I am very good at blocking horrible scenes out of my head. I am better at not worrying about things until I have to. When you are a cancer parent, it is the ONLY way to live. Otherwise, the fear can overtake you, and then you are left as a pile of nothing and quite unable to take care of anybody or anything.
So, as I see everyone posting different things on Facebook, email, etc as to what they are thankful for, (Starbucks, really?) I thought I should try a list of my own. Because in light of all the tragedy that I have seen in the last year, I have also learned an immense amount. I have learned that you can take a bad situation, and turn it around to something good. And that there are so many people in the world, with giant hearts that that care about us.
- I am thankful for the love of my parents. They taught me so much that I can now carry on to teach my own kids. Like loving people, appreciating nature, giving to your local community, and sharing all that we have with others.
- On that note, I am very thankful for Ally's Army. A little old person like me managed to garner enough support for my girl such that she had 400 people marching behind her at the Leukemia and Lymphoma Light the Night Walk. We did something to honor her and also raised $40,000 for the charity as well. (tops in the entire tri-state area) Thankful. Thankful. Thankful
- I am thankful for all of my friends, old and new, that hold my hand as I walk through the valley and fight and fight. My standard family of 13...they are the friends that are really like family. Also friends that watch my kids, make us food, pray for us, bring me medicine when my kids are sick, send me coffees for the hospital, make sure we get our vaccines, clean out my refrigerator, do my laundry....you get the idea. Also all of my friends who also have a child who is facing cancer..we support each other so much. Not everyone has these type of friends, and I am thankful
- I am thankful for Jerad's parents and his sisters who have somehow taken a bunch of days off work to help out with Evan and Carly while Jerad and I go to spinal taps, bone marrows, hospital stays, etc. They are not just coming to help, but using their vacation time to do it!
- I am thankful for my heros in life. Dr Broxson, Dr French, and Dr Dole. And all of the kind medical staff at Dayton Children's who have become almost like a family to us. Robbie, Sharon, Amy (x2), Heather, Rachelle, Nicole, Beth (x2) and countless others. They are saving my child and will forever be my heros. And nurse Sharon has even taught us how to crochet. In her spare time, of course.
- And since I have spent so much time in the hospital over the last several months, I am thankful for all the little things too. Mostly for the times when our whole family is together, but also for just sleeping in my own bed. Or being able to get my own groceries. Or having time to open the mail or do a little laundry.
- I am sad that my kids have had to face a lot of life's lessons too early in their life. But I am thankful for the way they are handling it. Not a day goes by that my son does not mention his Ma. Just today he was making a bead thing and he said...I am making this one for Ma, but I just wish she was here so I could give it to her. Even my two year old still talks about her. They all know that I don't have my mom and that it makes me cry and they are just fine with that. I do believe I have three of the most compassionate kids that exist....just for unfortunate reasons. But they will have big hearts someday and they will HELP other people, and really that is all I want.
Monday, November 23, 2009
I took her in for her blood test this afternoon. That brave girl doesn't even cry anymore. I think her sister gets more upset than her just watching it. The results are in and her ANC only hit 680. So, as I said yesterday, I was going to let this determine our fate. It has to be 750 to start the chemo. Chances are we could have pushed them a little and her ANC will likely be 750 by Wed morning. She probably could go. But they didn't really give me that option and we are scheduled to go in on Monday morning to start a new round. Another delay, but I am looking at it as a bit of a Thanksgiving gift for us. We can enjoy the holiday and each other a bit more and then we will collect our strength and start the next round on Monday.
We are a bit concerned with Mondays. Jerad and I think it may be a harder day for us to handle than our typical Fridays. I think it will be Monday for a while now. (next two months?) We are concerned that it will be harder to get help to watch the other two kids, but I am sure it will somehow workout. It always does. We may have to rely more on our friends and less on Jerad's family.
The Monday schedule may also be harder for Ally to try to attend school. If she is in any pain, then Tuesday is out too. So she may be able to get a couple of days in. Then again, she hasn't been to school in a month and half now. For the first time today, I felt she was good enough to go to school. But I wouldn't let her go for fear of her picking up an illness and being in the hospital for Thanksgiving. Maybe next week? I just don't know. No matter what, we are still counting our blessings that we are at home. No hospital to contend with.
And that being said, it is amazing how much better I feel now that I have had a few days at home and have gotten a few full nights of sleep. This is how people are supposed to operate. I am just always flying by the seat of my pants. But the last few days, I finally feel some small sense of control. The two months worth of mail, voicemails, etc have been gone through...we have cleaned up all the frantic messes made when we were gone and I even bought something at the store today and used a coupon. Coupons, now there is something to laugh at...time to clip a coupon? a list? a planned visit to the store? Unheard of. I am even going to try to work tomorrow...with Tuesday being my "normal" workday.
But........normal won't last for long. I know it. It will be pulled out from under me again soon and I will fall back down. So now I will just be thankful for what I do have. As I always should be. And I did save $1 on laundry detergent today, so there.
PS One item I forget, but posting later...I am NOT, repeat NOT, caught up on my emails. My inbox says I have, um, something like 5000 in there. Yep. I am seriously not kidding about that. I should take a picture just to prove it to you. I have a little bit of an issue with email....it is called "never deleting" but I also have not been responding too well to email either. So please, if I owe you one, just give me a little time. I will hopefully find your needle in my haystack.
Sunday, November 22, 2009
We have a doctor friend, who will remain nameless per her request, who gave Jerad her H1N1 shot. It was for her and she chose to give it to Jerad...said he needed it more than her. We went to her house to get it! And they are very hard to come by. We were very grateful for that. She also gave one to me last week and I am feeling a very strong sense of comfort that we are all now protected against the evil swine flu.
We also watched our Buckeyes continue their dynasty over Michigan. Go Bucks!
Finally, we are doing a few projects around the house. Putting some shelves up in the kids toyroom. Hanging some curtains in there that I bought exactly a year ago. The thought that it has taken me a year to hang them is ridiculous...Mom got sick, and then Ally, and I guess that really is the ridiculous part. We are very much behind in doing anything around our house...organization has fallen by the wayside and that bugs the two accountants around here.
Check out my lovely Ty Pennington at work.......(see the toolbelt?)So you all follow us through the bad times and here I am boring you with the normal day-to-day stuff. I will take boring anyday though. Last night marked day 7....7 days in our own beds...a new record.
Ally's ANC was 170 on Friday. Not very high. Took her forever to start rebounding. They did tell me she had a lot of "baby cells" that will grow up to be good cells and cause that ANC to rise this week. If it is high enough by Monday (750) we will start the next round of chemo with a spinal tap and other drugs on Wednesday. Otherwise, due to the the holiday, it will be Monday the 30th. Not sure which I prefer....going ahead and avoiding a five day delay, or waiting and having a stress free holiday. So whatever God chooses for her ANC to be will be my deciding factor. Will keep you posted.
Thursday, November 19, 2009
I am feeling a bit better. Not great. The medicine I am taking is making me not want to eat. Food is actually quite repulsive to me. This must be God's way of teaching me what my daughter goes through every single day. Long term illnesses...how do people stand it? Pain, suffering, for a long period of time. I am worn out and have only been feeling bad since Sunday.
We are enjoying being home. This has to be a new world record for us. 5 nights in a row. Dare I say it (knocking on wood) I just wish Ally felt a little better....she seems a bit depressed which is not like her. Being stuck in the house all the livelong day....day after day....I guess it can get to kids too. She has had a few hours out playing with Madden and Madison, but that is it for the week. It is getting colder, so tonight we had a fire and some smores. That always livens things up a bit.
Thanks for keeping up the prayers for our girl and all the kids facing cancer.
Wednesday, November 18, 2009
I am having my own medical dilemma right now. Today I had to get an xray, a CT scan, and an ultrasound. I got two shots. I got three prescriptions. I am still not even sure they know what is going on with me, but I am in some severe pain. (thus the lack of blogging yesterday and short one today) The whole time it seemed like not so big of a deal since I have watched my daughter go through so much. I would always rather it be me, of course. She is my inspiration through everything.
She wants to go back to school, but with an ANC of zero, I can't let her. We will see about next week.
Thanks to Erin Cobb for all the supporters you sent to comment on my blog yesterday. I have made several good friends on the internet..you know who you are....and I am so happy to have made friends as a result of this blog.
Monday, November 16, 2009
Sunday, November 15, 2009
I made it my personal mission to make her drink water and apple juice. She only wanted Panera chicken noodle soup...but promised she would eat it. She is very picky. So I tried to talk her into letting me leave to go get it. No go. So Jerad dragged the kids out and got it and then delivered it to the hospital. And she ate it, and she drank a 20 oz bottle of water and I pretty much begged them to let us go by 3:30 and they did. Me rushing them all along with my bags packed and sitting in the hall. I can be a nuisance about stuff like that. I stay on them like white on rice. Actually a lot of the parents practically RUN out of there when given clearance. Whatever it takes for my girl or more likely whatever it takes to get me the heck out of that place.
So she is home and she ate a huge dinner. My cousin Kevin (an excellent cook) made us her favorite: roasted chicken, mashed potatoes, and corn. And it was fabulous. When you pretty much don't eat any meal type food for a week, then you get that delivered to your door, well......it is just heaven. We LOVED it. Thank you.
We are always a bit uneasy about things, but I am hoping she sleeps well and we can all enjoy our own beds. She has a morphine patch on right now, so hoping it keeps any lingering pain at bay (and helps her to sleep).
Thanks for always thinking of us. I am praying for a normal Monday, Tuesday, Wednesday, and Thursday. Back to the hospital on Friday.
Saturday, November 14, 2009
It was a beautiful day here (of course, since we are trapped in hospital) but I decided to take Carly down and visit with Ally in the courtyard/playground area. Both of the girls loved it (Evan was at Sammy's bday party). My girls are just so cute together...I am envisioning them a long time from now being best friends and it makes me happy. There are some Snow White statues out there, which Carly just loves. So Jerad and I were sitting happily on this park bench and the girls were holding hands checking out all the dwarfs. SMILE....it's the little things right? And then Ally actually went down the tornado slide. I haven't seen her go down the slide in a long long time. (she was obviously unhooked from her IV for this little adventure) So as you can tell, she is feeling better.
Then we went Christmas shopping in the gift shop. Last weekend we did the same thing and she bought quite a few gifts in there. I had to leave today because she wanted to buy something for me. She is also getting to be a master at online shopping.
So tomorrow will be Day 10 at the hospital. The only day we had off was Tuesday. So 9 out of ten days spent here. And we just did 14 straight days right before this. Come to think of it, she has been here the better part of the last two months. We started this round mid September. It is really hard. One of the hardest parts for me is being lonely. I sit down there for twelve hours at a time with Ally. And then I go home put the other kids in bed and am by myself again. Here I am in one of the most stressful, sad, emotional, hard moments of my life and I never even see another adult. Not seeing Jerad is just so hard. We talk on the phone...give a quick hug when we transfer responsibilities, but that is it. Which is why today at the courtyard was just so much fun for me. I actually got to have my family together. A very simple thing, but yet another thing that cancer has taken away from me.
Here's hoping that we get to be together soon and also starting to say some early prayers that we will be together for the holidays. Off to help Miss Ally with her beading project...and yes it is 10pm. Hospital time is quite different from normal time.
Friday, November 13, 2009
So since I wrote that last paragraph, she has eaten half a taco and also half a klondike bar. Woo hoo. She is begging me to go home and make her this chocolate chip cheese ball thing I make and also some mexican dip. But I can't leave her here and not sure I can challenge Jerad to such things either. (and he is trying to entertain the other two kids right now with a game of putt-putt....it is a beautiful day here and I am sure there are not too many left) The coffee cart closes at 2:30 (important stuff!) and I have missed it for the second day in a row. Can't do the cafeteria coffee. I have tried lots of times. It is funny how I know every in/out of this hospital and where everything is in what vending machine or what is in the gift shop. Or which day the cafeteria serves pasta. Or which day they polish the floors. aaaaacccccckkkkk....it is all too familiar.
Several of the kids got to go home today, so it is very quiet here now. No visitors today except for Ms. Vicki who wanted a manicure. She is VP of the hospital here and a long-time friend of ours. Ally quickly changed her sign to read kids, doctors, nurses.....and administrators! Whew, big word.
I keep close tabs on all of our fellow kids stricken by various cancers. Everybody has a blog. I think Ally thinks every kid in America just has a blog written by their Mom. Man, everyday lately it has just been bad news. More bad news. I don't know what is going on, but I hate it. We become close friends with most of these people. There is a kinship between us all and we all support each other. We all have lived the heartbreaking moment when we were brought to our knees by this terrible disease. And then we have all summoned the courage to fight with everything we have. Please pray for all the kids who are battling this terrible monster. And give your kids an extra hug no matter how old they are.
We will try to make some fun this Friday night in the hospital. I think this is the seventh Friday night we have been here out of the last eight or nine. So ready to be done and home......
Thursday, November 12, 2009
All day we offered her any kind of food...ice cream, slushies, cake, soup, mashed potatoes...anything smooth. Nope. She wanted chili. All day long, just wanted chili and never wavered. Don't ask me why, but she did. She wanted my homemade chili too, nothing from the cafeteria, etc. I called Jerad and taught him how to make it over the phone. Jerad cannot cook. AT. ALL. But I told him and he was ready to try when all of the sudden Pam Booher calls and says she is bringing over a pot of chili. Now how weird is that? Some divine intervention or something?! Jerad brought it down and she tried to eat it. She really tried..five bites into it she was crying in pain and we had to hit her morphine pump. She was gonna try again though. At least she felt hungry.
She set up a nail salon in her room today. She made several signs and posted them in the hallway and in the kitchenette.
She was busy almost all day long. We had people in our room almost all the time. The kids, the nurses, the PCA, a few of the moms...it kept her busy which was good. One of the nurses even brought her a laminated sign for her door that read "Ally's Nail Salon" For some reason I think it added to my exhaustion though as I talked to people all day long. Of course, I love to talk though...but it always amazes me how tired I get and I am really just sitting around. That goes to show you that the mental anguish part of the day can just take all the strength out of me. Talking to other Moms...hearing about how the horribleness of cancer has affected them. Oh, it breaks my heart. Over and over and over again. This is Ally's little friend Ashley, who has been having a really rough time lately, but was so thrilled to have a bigger girl paint her nails. (she just turned five) Taken with bad cell phone camera today since my regular camera battery was done.
We were lucky to have one of Ally's all time favorite nurses today: Nicole. She went part time recently and we hadn't seen her in a while. (not sure how since we practically live there) She was trying to help me to get Ally to eat and offered up herself...Ally was allowed to spray her with a syringe of water if she ate something. Ally did eat a little bit and Nicole got wet. She really cares about our girl...as do most of the people that we work with. I don't know how they do it. It takes a very special person.
I am really hoping to deliver good news tomorrow that Ally is even better and coming home. We could really use a weekend where we are all just together. And with that, I am practically falling asleep at my desk and will just say goodnight.
Wednesday, November 11, 2009
How much longer can I watch my daughter suffer in pain? How many times do I have to look her in the eyes and give her some feeble offer of help. A popsicle? A glass of water? Medicine? There is nothing I can do most of the time. It is awful. And need I repeat it, it is just not fair. I am tired and worn out. I am finding it very hard to take care of the other two kids and/or myself. When, oh when are we going to get a reprieve?
Tuesday, November 10, 2009
She has been asking for me to make her a roast chicken. She wanted it Sunday and Monday, but that is just not an easy thing to throw in and have done. I had to go to the store to get the chicken, which complicates matters. So today, after a six month hiatus from the grocery store, I took her back. She has not stepped foot into that store since mid-May! I had a bunch of stuff to get...too much to have one of my runners get for me. So off we went. I shouldn't have done it, because of the germs, but I did. I am tired of being so trapped that I can't even run to the store. I did find out that they have wheelchairs with little baskets on them. I obviously couldn't push both a wheelchair and a cart, so I filled a cart while she was still walking. Then I left it up by the register, put her in the wheelchair, and finished the trip. Not without a lot of stares. But I did it and I am well used to the staring by now.
And that was pretty much our day. Again, hoping her sores get better and not worse...or my address will once again be Dayton Children's.
Monday, November 9, 2009
We traveled back down to the hospital and they checked her methotrexate levels and VOILA she was exactly at 0.1%. Which is exactly what she has to be to be deaccessed. So that was really good. She cleared the chemo in 46 hours, which last time it took 11 days. I made the conclusion (and talked to the doc a bit) that the antibiotic that she was on for her toe infection caused the marked slowdown last time. It is the only variable that existed from the 1st, 2nd, and 4th rounds. I wish I could shout it from the rooftops (Megan this one is for you)...do not let them give your child keflex (spelling?) when getting high dose methotrexate if at all possible.
The bad news is that Ally was still not feeling well. Vomited again at the clinic..which really isn't that different, this stuff has made her vomit every time...but it seems to be a little more this time. And she has a cold and the phlegm is not helping matters. She has not eaten in days either. So in her stomach we have phelgm and we have medicine and it is not a good mix. She is down 5 lbs again and I try to get her to eat anything to no avail. Got a little rice in her tonight, but that has zero fat or protein which is what she needs. She is running a low grade fever too...we are just watching and waiting. They don't count it for her unless it goes above 101, but I just hope one is not brewing in there. We did that last week and would like to stay clear of the hospital for a while now.
The poor girl had to undergo a rapid strep test today too. You would think that would be no big deal for a girl with leukemia, but she threw a crying/screaming fit right in the middle of the clinic for about a half hour. She just keep freaking out about it, huge tears. The nurses had never seen her act like this. I kept telling her it was no big deal compared to the things she has done, but I couldn't reason with her. Finally, by some grace of god, her Dad and her Grandpa walked in the room. They had been at Children's for a work meeting. And they got her settled enough to do the test. And guess what???? NEGATIVE. Which is good, but I felt bad she had to endure yet another thing.
She is not due back for chemo until 11/20. She starts a new round. I really really really am hoping she can stay well until then and we could have 11 days without the hospital. She will have to go twice for a blood test, and hoping she doesn't need blood, but it is probable. (she has every time)
When I packed the car and rolled out of the hospital yesterday, it was a good feeling knowing that we are done with the "planned" hospital stays. I just want to keep the other ones to a minimum.
I am hoping we all get some rest tonight and her belly pain subsides.
Sunday, November 8, 2009
Speaking of Ally's Army, check out these members who got a 14 point buck this morning at Fox Hill with bow and arrow. Jon Trick, who works at Synergy, got the deer. To all you Bambi lovers.......don't dismay. They are having an overpopulation problem up there and something needed to be done. I can testify to that as I saw several deer on our way home from Cincy last night and I was scared I would hit one.
Ally is definitely suffering from some belly pain. If I could get her to even eat one morsel of food I think it might help. She did get to go outside to the Dayton Childrens playground yesterday in a wheelchair. It allowed her the opportunity to see Evan and Carly for a few minutes! The weather is just beautiful this weekend and the dr insisted that she get out for a few minutes. He also said she could go home today (on fluids) and we are waiting until about 3pm for the home health people to set her up with her fluid backpack. Then we will be making the pilgrimage back to the hospital everyday until she clears the mtx level (.1). Hopefully it is sooner this time!
Thanks to all who have made this weekend a little better for the Barnett family. Just hoping that my girl starts feeling a little better and we can move on to the next phase of treatment. As my friend Jodi always reminds me, one day down is another day closer to the finish line. We are five months in. 23 to go.
Thursday, November 5, 2009
So remember yesterday how I was saying I love visitors to break up the monotony? Well today I got the best surprise. We got a visitor all the way from Tampa Bay Florida! A good friend of our family's from our old neighborhood growing up..Gail McGovney. I swam with her daughter Jodi and she was also golfing buddies with my Mom. She called me up out of the blue and said she came into town to see a sick friend but also really wanted to see us. Of course, I just loved seeing her. We had a great visit and she knows pretty much everything we are going through because her husband Jon had multiple myeloma (another blood cancer). She was also an excellent source of motherly advice. So thank you Gail. You made my day. Here is Gail getting a manicure from Ally: (people come from far and wide to get their nails done) I thought Jodi might like to see her Mom since Jodi lives in Brooklyn!
I am also posting a picture of us with my birthday cake for this year. I neglected to post it before because I was too crabby about my birthday. My sister Melissa took over for my Mom and got me an awesome ice cream cake. We did try to make the day normal. Thanks Melissa.
Finally, tonight was the first (exhibition) WSU basketball game of the season. Ally was feeling really good (three weeks since chemo!) and her ANC was very high (over 1000). We kind of know that it not going to happen very often throughout the season. The next round of chemo should keep her ANC low for a long time. I am guessing we won't be able to take her into an arena filled with 5000 people too often. So we took advantage and went over and watched our boys bring home a win. She loved sitting with her friends and then lo and behold a cheerleader asked them to go out onto the floor to do the chicken dance. She loved it. She said she was doing it whether her friends went or not. (not like the old Ally). Jerad caught this picture of them doing the chicken dance on the jumbotron...hard to see but they are right between the cheerleaders.
And here is the girl who has been to almost every game since she was born onto this earth. I can probably count on one hand the number of games she has missed in her eight years here. I was also very touched when I looked up and saw the head coach for the Raiders, and our friend Brad, wearing his Ally's Army bracelet during the game. Here he is all dressed up fancy in his suit, yet he kept his orange bracelet on in support for our girl. So many people, so many bracelets out there, we are blessed.
Please pray that Ally tolerates this chemo well and bounces back to her old self. Hoping the long days and nights at the hospital pass quickly also. On that note, I gotta go pack my bags again.
PS...Some of you asked....my friend Kim Grant is now on the school board. Wooooo Hoooo for Kim.
Wednesday, November 4, 2009
I spoke to the clinic about noon today and they decided that she was still too sick to go forward with the Thursday chemo. We are now looking at a Friday chemo if she is well by noon tomorrow. The home health nurse came out and I did learn how to give Ally a different kind of antibiotic today. It comes in a little balloon type thing. I hook it up to her port and it infuses over 30 minutes. When it is done, it ends up being a deflated balloon. I am adding this new skill to my resume. I will be repeating this tomorrow for her last dose.
It is quite hard to sit in this house all day, everyday. With a sick child and a two year old. Which sometimes does not mix very well especially if they are both requiring my attention. How I would love to be able to just hop in the car and do things like I used to...put Carly into gymnastics or something similar. But I can't. I will say my girls are pretty good together...never fighting...and it makes Carly happier to have her sister here. I think that Ally is going to be here for a while. I don't see any school days coming soon for our Ally. So this is a new challenge for me to figure out how to get errands done etc. For the last month, it just hasn't happened. I especially enjoy when someone comes to visit me (thanks Nicki) and breaks up the monotony of it all.
Maybe tomorrow, we will have a plan for Ally's chemo. It will have been three weeks since she has had it and I don't want to delay anymore. That seems to be a long time to me!
Thanks for all of the birthday wishes from everyone. I am lucky to have so many....
Tuesday, November 3, 2009
About two hours into my birthday, Ally had come down with a fever. 101.6. We had to go to the hospital. And the day pretty much revolved around that and taking care of the sick girl. They did allow her to come home tonight. But she is still sick and miserable. Tested negative for the flu, but they think she might have some sort of virus. The home health nurse is coming tomorrow to give her more antibiotics. They are hoping she recovers fast so that they can start her up on chemo on Thursday. Greaaaaat.
And that pretty much sums up my day. Maybe next year will be my year.
Monday, November 2, 2009
They try to make my lives easier by keeping tabs on sicknesses, even providing me anonymous reports on what is going around and how many kids are out, etc. I speak to Ann and Linda (our school nurses) all the time. They call and warn me about everything from chicken pox to flu to rashes.
Valley sent a huge contingent of people to the Light the Night Walk too. Some of them were not even Ally's teachers, but they are just the caring sort of people.
On Friday, I had the opportunity to go to both of my kids Fall Parties in their classroom. I would love to be helping out in that school all the time. But my circumstances do not give me that chance very often. I hate it, but I can't change it. So I really enjoyed going into their rooms and helping a little bit.
In Evan's room, he had a party with about six different craft/game stations. He absolutely loves things like this. I loved seeing his little face concentrating while playing bingo or while cutting out his bat. He is lucky to have several good friends in his class. And while I wish I could spend more time with Evan and all things kindergarten, I feel that he is happy and learning and I am thankful. Here he is:
As soon as I walked into Ally's room for the party, I saw this.
Wow! I choked back every single tear...trying not to make a spectacle of myself in front of the class. The entire school....EVERY PERSON....signed this banner for Ally. It is huge, probably 15-20 feet long. They also made her several books to cheer her up. Joke books and letters about how much they love her and how they love her hats and how much they miss her....these are treasures. She has to feel loved. I am going to find a big long wall in my house and hang this banner up for Ally.
This brings me to one final request to all my Beavercreek friends. ( I know this eliminates most of my readers.) But one of my good friends (and loyal workout partner) is running for the local school board. KIM GRANT! She is such a good friend that if you look really close you will see my name on her campaign signs. I am her campaign treasurer! She is very dedicated to the cause of keeping Beavercreek Schools in the excellent status that they currently hold, but which could slip away if we are not careful. She has always been the kind of person that can get things done. The motto...if you want something done, ask a busy person...well that was written for Kim. Last fall she was right there with me when I was managing the campaign for the passage of the Beavercreek school levy. We both spent many a Saturday going door to door and campaigning for what we believe in. She does a lot for our community, she works at the Children's Hospital, but most importantly she can be our voice for what is best for our kids. So vote for Kim Grant.
Sunday, November 1, 2009
- We hung out with our friends. Both Friday night and Saturday night. So nice to see those people we care about. We have not had much time to spend with them lately and I miss them!
- We ate meals together, we exercised, watched a little football, even did some cleaning. We did not get to the grocery store though. We are gonna try to make it a full month without going! Haha.
- We went to church...as a family! Not Ally, she stayed with Pa.
- We spent some time with Jerad's parents on Saturday...I even made homemade soup and bread. Watch out! We also spent time up at Fox Hill with my Dad...a little gin rummy and Ally and Pa made cookies and apple crisp.
- We had a wholesome, yummy Sunday night dinner at Grandma and Grandpa Boohers house. One of those meals that cooks all day and tastes like it. Awesome medicine for our souls. Carly even calls them Grandma and Grandpa which is so cute.
So she lasted about an hour and fifteen minutes. And it was cold! But she walked almost the whole way, we had to pull her a little bit on the last street. And she was so cute. So so cute with her BFF Madison. They wanted to be Nail Technicians, because that is just what they do all the time. FINGERNAILS!!! Remember? boys, girls, grandpas, aunts, friends?!? With the help of Suzanne, we had a cute little handmade outfit...and also one that is original...I bet you didn't see any nail technicians coming by your house.
Also, sheer coincidence and not really planned, their little brothers both went as Jango Fett from Star Wars. And these boys busted out some Halloween candy. They ran and ran and ran. And when his sisters stopped...Evan kept going. He was gonna get the full two hours in. He would never stop. He would have gone two more hours had we let him. (just like his Daddy, this one) He is so full of energy and he was thrilled to be trick or treating.
And Carly girl, ahhhh, she was a cute little Cinderella. She told everyone she has seen for the last two weeks that she would be Cinderella. Too bad she was scared of every person that came by with a scary mask on. She nearly peed herself in fear quite a few times. She held on for quite a while too...thanks to her Daddy for toting her around and up to all the doors. She always said Trick or Treat, and thank you in her cute little Carly-girl voice.
Once again, we were feeling the loss of Ma not being there. She just loved Halloween.
So now we are looking at going to the blood lab on Monday morning for another blood test. I am fairly sure that she will be high enough to start, which means they can begin on Tuesday or Wednesday. This will be her fourth and LAST in-patient stay for methotrexate. I believe her dosage will be 25% less than it was previously due to her horrible intolerance and mouth sores. I am still scared to death and anticipating that we will have the long days/nights with fluid and possibly the mouth sores again. As a parent, how do I sign my daughter up for this again? It is so hard. So hard. But we have to keep battling the cancer, and with her being a high risk case, we just can't let down our guard. We have to push through the pain (and worry) and just support her as best we can. But I can also say that it will be with great regret and sorrow that I watch that big bag of yellow fluid drain out of the IV and go into my daughter.
Please say prayers that she tolerates it fine this time around and that we can be done with it forever. Actually, let's just be done with cancer forever too.