Tuesday, March 30, 2010

Our Days in Pictures...

Today I have an update in pictures. I have been taking a bunch of pictures lately, so I will share. A lot of them are of my girl Carly...not trying to play favorites, but she is the cute little one at the Easter event. (and then my camera ran out of batteries) Our week is going much better than planned. Ally is really feeling pretty good....I can tell she is a little down, but not much. I am starting to wonder if she needs blood. She needs it so much that it is always in the back of my mind. But so far, the "warning" has not come true. This sort of holds true to our history of things cropping up on us when we least expect it. (and sometimes not when we DO expect it) Thanks for thinking of us, and here is what the Barnetts have been doing.

Carly girl got her first (very first) haircut. I can't believe she is a few months shy of three years old when she got it, but its true. I didn't want anyone to take my baby's ringlet curls away. Phew, they are still here even after the haircut.
She kept calling it her "Princess Haircut" and it took place in Mrs Booher's kitchen by Mrs. Booher's hairstylist. Carly ran home and quickly put on a princess dress when she was done. Check out the fancy hair style.
We went to an Easter party in our neighborhood. Here is the princess again with her Daddy.
Carly was not fond of the bunny and is MIA.
However, she was quite shocked and happy to find candy in the eggs.
The big girls always take care of little Car-Car.
Her brother was pretty sweet watching her find eggs too.
And she loves cupcake frosting...I luva her face
Last Friday it was hat day at school. If students pay 50 cents, they can wear a hat with money going to the Leukemia and Lymphoma Society. A lot of kids wear Ally's Army t-shirts too. Have I mentioned that I love Ally's school????
Last but not least, one of the coolest ideas....EVER. My college roommates from Miami wanted to treat Ally to something fun. They were so inventive. They hired a caricaturist to come to our house and draw pictures of her and her friends. The kids absolutely loved it. I thought they would like it, but they stood by the artist almost the whole hour watching him. They LOVED it. And they each went home with a customized drawing of themselves doing one of their hobbies, etc. Just very cool! Thank you Alli, Kelly, Jenny, Lisa, and Kate. I love you guys for thinking of us!
Seeeee.. They were so fascinated and giggly about it. FUN STUFF.
This is Ally's. If you knew my Mom, you will see that this is almost an exact replica of my mother. Wow. Of course she chose to be painting nails.
Princess Carly Anne...

and Evan...playing the Wii.
We did get a picture of Jerad and I too. Some people that were here can attest to my thought that he looks sort of like a prisoner in our drawing. Too scary for the blog.

It is supposed to be over 70 degrees for the next five days so I am hoping we can enjoy the nature of spring. Trying to plan a bike ride/picnic and a nature walk if our girl is up for it. We shall see.

Thanks for checking in!

Sunday, March 28, 2010

Spring Break begins.

Ally finished up four STRAIGHT days at school on Friday. She got out of school a bit early for Spring Break, but 15 minutes after arriving home we were back into the car for chemo. This day was a little different, because we were taking her friend Joshua with us for the afternoon. I was thinking it would be a relatively quick one (two hours or so) and that she would enjoy having her friend there to pass the time and play some games. And she did. They played several games, did some sand art crafts, watched a little iCarly, ordered ice cream from the cafeteria, and showed Joshua all around the clinic. Dr Dole even came into to examine Ally and said "Josh...how bout a free check-up?" to which he meekly said no thanks. Even though most of this seems like fun and games, she was there for one purpose only and that is to receive her chemotherapy. And to us, it is a quite normal, quite regular experience, but to Joshua I am sure it was not. We made it fun, but he still sat very still in the corner as the nurse accessed Ally's port with the needle. I told him that she wouldn't cry....she is well used to it by now. We went through our usual routine....take the shirt off, wipe off the emla creme, cleanse the port site with alcohol. Then, she lays back, Bobo right on her, and I grab both of her hands tightly while the nurse goes in for the prick. If I don't she gets kinda slappy with her hands and she knows this. It is just instinctive. When we were doing this, I looked over to Joshua and he had a small look of fear in his eyes. Then he put his hands over his face and just stopped watching. In a matter of seconds, it was done, and they went back to their regular business. I said "See, no big deal right?" But really, Ally's friends know very little of what she goes through when she is at the hospital. Luckily, most kids in America know nothing about it. But maybe today there is some small bit more of understanding as to what she does go through. And she is the bravest girl I know.

She got her final (FINAL) dose of chemo for this phase that was called interim maintenance. Be gone with you interim maintenance. BE GONE. This time they gave her a huge (the biggest yet) dose of methotrexate. It scares me really bad. The doctor came in and gave me a warning. He said...because of her counts remaining high, he had to give her an even higher dose of the mtx. He said it was a nearly toxic amount and not to be surprised if she ends up back in the hospital by Wednesday or Thursday. It takes a while to hit her, but it could bring about some more severe stomach and/or joint pains. This time he told me not to wait...to bring her down sooner rather than later if she is suffering and they could try to mitigate the effects. I have never really gotten a warning like this. I am not sure I like the word "toxic" when referred to the chemo they just put in her veins. The warning is scary and it has caused me to be up at night here the last couple nights with worry.

So, the kids sat and played their games while the machine infused Ally with the toxic stuff. It all appears very innocent. I tried to just pretend it wasn't happening, but that doesn't last very long. And now, spring break is upon us. Lots of people are traveling or visiting family or at the very least coming up with a list of things to do that might be fun or different. We are not. We are just going to lay low and hope that the warning does not bode true for us. And it might not. She has done amazingly well for the first 36 hours or so. No complaints yet.

Oh, and when Spring Break is over and the kids go back...well that is April 6th. But that same day, Ally is scheduled to start her last intense phase of treatment with a spinal tap at the hospital. This phase will last eight weeks and will also include 10 days worth of trips to Cincinnati where Ally will undergo cranial radiation. On top of some very intense chemo....they don't stop that either.

We are on about mile marker 23 of our intense chemo "marathon." Please give us the strength to cross the line into maintenance.

Wednesday, March 24, 2010


Ally is doing just fine now. See....we really needed these couple of days. She has enjoyed going back to school and even went swimming with her cousins and played outside a little bit. She is sleeping at night, for the most part, too. Hallelujah. Dr B put her on two new medicines (one for her joint pain and the other for stomach) I am not sure if they are working or if it is just that the chemo is out of her body. It is nice to see her smiling face and watch her being goofy. It is even better to see her wanting to eat! Trying to build up some strength (all of us!) so that she can withstand the chemo on Friday. It will be the highest dose of methotrexate given to her yet and then we are done with it for a while.

Ally's friend Amanda (who also has ALL) just hit her maintenance phase. Ally's friend Jackie (kidney cancer) has her last chemo on Friday. In a little over two months, our Ally will also hit maintenance. We will have more days like today. Keeping our eyes on the prize....please pray for all them.

Monday, March 22, 2010

God was with us....

So I know that God is guiding my family through these hardships. I know he is there and quite honestly is the one responsible for giving me strength when I feel like it is all gone. And today...well I needed a little extra boost. As I dragged myself into the hospital this morning with the pit in my stomach. I could hardly crack a smile at anyone (not really like me) and found myself getting annoyed at even the tiniest of things (for example, loud chewing). Again, this is not like me. I wasn't feeling myself and I wasn't ready for more chemo for my daughter. I usually am ready...somehow, someway, but not today.

Ally had to undergo a huge long ultrasound. Not just her pancreas. No, they had to do both kidneys, her bladder, her gall bladder, her spleen and her liver. What they were looking for, I do not know. I refused to ask. I just let them do it and prayed and prayed (literally through the whole thing) that they would find no abnormalities. It took forever. At the end, the tech said she had to leave the room for a minute to show the doctor and to just wait there. That is not how it worked last time, so again.....the pit in my stomach grew increasingly heavier. I started panicking...why the doctor, why all these new tests, what the heck was going on???

If you know anything about healthcare these days....you would know that the tech can't tell you anything anyway. I didn't bother asking what was up. So we left to go upstairs to the clinic for chemo. We waited in the waiting room for an excessively long time before being called back into the clinic. (did I mention how annoyed I was this morning??? well I was) After sitting for a long time, Dr B came walking by and stopped to talk to us. I asked him what the heck was going on and he said he did not know but would find out. Turns out everything was okay. They just had to go about things in a way that would make any mother scared, not to mention a mother of a child with leukemia!!! The bottom line is: God was with us. He had us right there in the palm of his hand. My bedside prayers in the ultrasound room were answered.

Not once but twice. Again, I felt God helping me along when I found out that Ally COULD NOT receive chemo today. I really in my heart knew she was not ready. But the protocol is what it is and they follow it. No diversions unless Ally's counts are off. Well I knew her ANC would be high (and it was >2000!) but her platelets were down to 23. They had to be 50! Oh thank you lord...rather than getting hit with two more chemos, she was infused with platelets instead. (thank you donors!) And she got another two hour infusion of IVIG which boosts her immunity. But no chemo. I knew she wasn't ready. It really could have broken her. And God heard my prayers. She is only getting a break for a few days...she has to go back on Friday for it. But a few days may give her little body a chance to come back closer to normal. And she needed it. So now we are looking at sending her to school this week. I think she has been off for a month. Next week is Spring Break and she can spend it recovering from Friday's chemo. They also took her off the TPN nutrition, and are trying two new medicines on her. One to help with her neuropathy and leg pain. And another to help her stomach. Both of which are still bothering her. I hope they work.

It is in these places of severe testing, with no way out, that our faith grows and is strengthened. For me, I have to hold on very tight to my faith. For without it, I would crumble at the door.

"Our burdens are our wings; on them we soar to higher realms of grace; Without them we must ever roam on plains of undeveloped faith." Mary Butterfield.

Sunday, March 21, 2010

Chemo Again

Ally was released from the hospital on Friday. We got home a little before dinnertime. As we pulled in the driveway, all her neighbor friends must have seen her. They rushed the car and she never even went in the house. She just stayed outside. Within minutes, a nail painting station had been set up in the driveway. Here she is:
She has started eating again. For this I am thankful. I want her to be done with this TPN (nutrition through her IV) It is a huge pain in the butt for both of us. As far as the eating, it has not been without pain though. She has been up again the last two nights in pain. Her legs/ankles are still hurting her from the last chemo 10 days ago. She takes several baths a day to try to alleviate the pain. We have done a few does of vicodin over the weekend for stomach pain.

As everyone else gets ready to start another school/workweek, we are headed back to the hospital on Monday morning. I usually don't feel the huge pit of dread in my stomach that I am feeling right now. But tonight, I do. Tomorrow, after her ultrasound of her pancreas, they will give her two more chemos (Vincristin and Methotrexate...the last mtx for a while). I can almost feel a small panic attack coming on, and then I talk myself down. She has suffered so much lately. It is hard for me to willingly take her in for more chemo. Sometimes enough is enough. But in this case, I cannot choose. I cannot ask them to stop hurting my child, because in the same process they are saving her. But I know I am signing up for another 10 days of misery. Then we go into another phase, and I am hoping it treats us nicer than this past one. The thing we know about chemo is that it is cumulative....it builds up in the system and gets harder and harder to tolerate. She is 10 months in and it is definitely hard.

I could not be surviving right now without the help from our friends and our family. We are tired and worn out and we tried to catch up over the weekend, but still have things that didn't get done. We lost a whole week with the pancreatitis and it is a struggle to get caught back up. I have had to call in more favors to get help for tomorrow's hospital day again. I truly do not know where we would be without the support that we have been given. Even 10 months in...we still need help, and a lot. Thanks to everyone who has helped us out here lately. It will never be forgotten.

Thursday, March 18, 2010

Thursday Update

Ally's enzymes came down a bit again. Somewhere in the 400's. This was enough that they are permitting her to eat low fat foods. So far this has included a baked potato, carrots, apple, and cottage cheese. And a chocolate milk. Really just a few bites of each. She has been having some headaches and also tried to spike a fever. 100.5 and 101 is technically a fever. I don't want to bring her in here for one thing and then have her get something else. Staying away from the hospital as much as possible equals her staying healthier. She is still pretty malnutritioned, so we are talking about doing TPN for another week. However her glucose is still slightly high so they are checking on that tomorrow again.

Getting to the hospital every morning and getting home every night at 9pm, just in time to put the other kids to bed. A lot of times I would rather just stay at the hospital, it is easier than dealing with the rest. But Jerad likes to see her too. Nothing gets done when things like this come up. Our lives just go on hold. Whatever it takes for our Ally girl though. She has endured so much now that I can hardly believe it.

Praying to come home on Friday or Saturday.

Here are a few pictures from our lovely St Paddy's Day week in Room 419.
Ally, Kate, and Aly...silly

Ally with the giant bunny that Grandma and Grandpa brought (won in a silent auction during which noone would bid against them because everyone knew it was for Ally)
Slippers Ally made courtesy of one crafty Momma...aka Lisa Sidwell
Lisa and Morgan
Ally and Ms. Vicki (the giver of the glasses for all of these pictures)

Ally loves this night nurse Rachelle. She had her a few nights this week. Including the first night when Rachelle and I helped her to try to get a splinter out. Uh, I mean, Ally screamed for over a half an hour while we tried to get the splinter out. Poor Rachelle and poor rest of the floor who all heard Ally screaming. This was when she was really tired and really cranky.
Thanks to all of our lovely nurses who we love. Nicole, Monica, and both Beths are just awesome caretakers. We also love Ms. Kim who runs all errands for us including getting us honey for the facials for the spa Ally set up in her room. (or nail polish remover, advil for mom, etc)
Thank you all for taking care of us so well. We love you.

Wednesday, March 17, 2010

To know my Mom....

Things are moving along. Slowly. But that's how they like it. Actually Ally's pancreatic enzymes were way down today (700) so they let her start to drink again. Clear liquids. You would think she would have guzzled everything in sight, but she really didn't. She had a slushie and some jello and a few sips of Crush. We will see how much leeway they give her tomorrow. Hoping for food and hoping she tolerates it so she can come back home soon. The whole hospital stay and dealing with two other smallish kids in the process (although we have some help) has me quite exhausted. Thanks again to all those helping from the sidelines.

I was looking back through some things that I wrote down at this time last year. Sometimes I try to imagine myself even a year ago. The thoughts in my head, the person I was...I was altogether different. Not in a bad way or even a good way, but just different. I was not scarred by this tragic turn of events in my life....but I was very much suffering the loss of my Mom who was just so important to me. One year ago, I had not met all these new people who I know love at the hospital. Nurses, doctors, friends, patients. I had not started a blog with loyal readers or people rallying behind us. I had lost touch with a lot of my friends, who are now right back with me fighting the fight. And so I started thinking...these people didn't even know my Mom.

A year ago, on a sunny Thursday, I stood in front of 300 people and gave a Eulogy for my Mom. I know it is odd, most people wouldn't have done it, but I had to do it. I had to honor my Mom and let people know how special she was. (Well most people knew she was special, but I wanted them to know why she was special to me.) I wrote this about my Mom and it was truly one of my proudest moments ever to be able to deliver the speech without breaking down into sobs on the stage. So again, in her honor, I will reprint it here. For those of you who knew Marcy, it might bring a laugh or a memory. For those of you who didn't know her, I want to give a glimpse. I wrote this before I EVER knew about leukemia, but I must have known that I had to be strong for something. There is an eerie premonition running through what I wrote: Here is what I said:

This is going to be one of the harder things I have ever had to do. I have thought about this moment for over a year now. People have tried to convince me not to speak, but I feel so strongly that I owe this to my mom. She would have been so honored for me to pay tribute to her. So please bear with me….

My mom. She knew when she was a small child that her role in life would be to be a mother and wife and a caretaker. My grandparents and my Aunt and Uncle always tell me about how she played “house” when she was a little girl. That was her favorite thing to do. She played baby dolls, had a play kitchen, an easy bake oven, even a real working iron. She loved these things and was preparing for us even then. When I was growing up, on Scotch Pine Drive, she truly was the perfect mother. She took such good care of all of us. She did everything for me…everything…so that all I had to do was enjoy the wonderful experiences of childhood. She was an extremely organized and practical woman. I remember having set days of the week….Monday was always for cleaning, Tuesday was grocery. Everything had its place with her. Anyone that knew her, they knew she was the epitome of common sense. She could give guidance to you on anything....She could fix anything around the house. She even had her own toolbox. She could prepare any kind of food. She could find you the best deal while shopping. She had the greenest thumb and could grow anything.

That brings me to core of the memory of my mother. She was not a mother just to me. She was mother nature. She LOVED nature and being outdoors. You can see the legacy of that all around you here today. We always had a garden and fed the birds. She loved growing flowers…she could name any tree, bush, or flower that you see. She loved walking through her woods. She would plant daffodil and other flower bulbs back in there. Even though no one would really see them. They were not for show…they would just make her happy. She would call me with great excitement as soon as she saw the flowers peeking out in the Spring. She would have loved if her daffodils were in bloom today…but instead we brought in all these daffodils just for her. She loved all of the animals too. Her “girls” as she called them….the ducks...lived on her pond. The deer come to this very spot every night as we put out corn for them. Even on her sickest days, she would notice her pileated woodpecker that would come to her tree in the backyard. She grew strawberries in the spring. She grew apples and peaches. She grew gourds for the fall and had a gigantic pumpkin patch for the kids to pick their own pumpkins.

Which brings me to her legacy. Her grandchildren. Five special kids who just called her Ma. If they wrote a book about the perfect grandmother, it was her. They only had a short time with her, but she made it so so special. She shared the nature with them. They were always going on walks, picking items from the garden, looking for fossils in the creekbed, or having picnics up at the top of the waterfall. They took turns feeding the ducks and the fish. In that short time, she instilled the love of the outdoors in them. She tried to teach them things all of the time. She always made them feel special. My daughter, Allison, was speaking to me the other night before bed. I was talking to her about someday when I will hopefully be a Grandma. And she said “Will you have special birthday parties at your house for them just like Ma did for us?” She always had a special themed party for them…all their own…sometimes even up at our picnic area with a pinata hanging from the big tree. Holidays were also a core of her life. We always had an egg hunt at Easter, a hayride in the fall and designed a gingerbread house at Christmas. She always took the kids shopping at Christmas. They could pick out whatever they wanted to buy us. They would wrap it up together and then hide the gifts in their rooms. This past year, I think that shopping day was the highlight of her whole Christmas. With that, she also taught them about giving to others. They would take part of their Christmas shopping money and give it to someone less fortunate. Even at age 3 and 4 and 5 she was teaching them how to give back. Her generosity to others, as most of you well know, was a gift to all of us. My parents have always taught us to give back. Pay it forward, if you will. Be charitable, have a big heart, treat everyone with respect, and love the life you live.

I never would have thought I could have made it through such a terrible ordeal as I have lived these past fifteen months. Ask anyone who knew me before this, and they would have told you I would just curl up and cry. My mother was my whole life. I inherited the same emotional side that she had. I am so much like her in so many ways. But somehow as we went through this, I developed this incredible strength. I knew the situation and I wanted to spend every moment that I could with her. I left my family and I took care of her most evenings, every weekend. When I would walk in her house or her hospital room she would always light up. Of course, I saw things that I never wanted to see. Heard things I hope you never hear. I know so many medical terms and could probably qualify to be a nurse. And although this disease is horrible, she was still teaching me in her own way. I learned to be strong, like her. I learned to fight hard for what you want and need. You see, about one year ago exactly, on Good Friday, the doctors told us she probably wouldn’t make it thru the weekend. They wanted to call Hospice and “make her comfortable” My Dad said NO NO, it wasn’t time. Because of his tenacity and my mother’s will to live we got one more whole year. I got one more mother’s day. One more summer at our picnic area. One more trip to our lakehouse. One more harvest at the pumpkin patch. She made me one more birthday cake. We had one more trip to Longboat Key and the kids had their Christmas shopping trip. We celebrated her 60th birthday one month ago. One year doesn’t sound like much, but it is over half of my baby girl’s life. She started talking and she started asking for her Ma. I learned to cherish every moment and live every day like it was my last. Throughout that year, I learned to hold onto hope when times get rough. I learned that miracles do happen sometimes and to be faithful. My faith in God was strengthened. My faithfulness to my Mom through this is something I will never regret. I had plenty of time to say what I wanted to say to her. I told her that even though she would not be with us, that she would live in my heart every single day. She will be my angel. Watching over me and watching over my kids. In every thing that I do, she will be there. Because she made me what I am today. I love you Mama.

Tuesday, March 16, 2010

Happy Birthday Melissa

Good news. It seems that Ally's pancreatic enzymes are trending downward. I think (think!) this means that the worst is behind us...that she has hit her painful peak and now we have to play the waiting game for it to go away completely. Her enzymes went from 1800 to 1500. 200 is normal. We still have a ways to go, but moving in the right direction. Her glucose was better today too so no more talk of that NJ tube going down her nose. Yay! She had an ultrasound that showed this is regular old pancreatitis and not something with cysts, etc. Most importantly, Ally finally got a full nights sleep and she hadn't had that in a very long while. The body heals when it sleeps...she even took a couple small naps today. She is using the pain meds on a pretty minimal basis...only twice in the last 24 hours. We want that little organ to heal up for her.

The hardest part is denying her food and water. How awful to want a drink of water and not be allowed. That would drive me crazy and I can't imagine being 8 years old. She says she is hungry. She wants to drink. She just got so MAD when I told her she could have ice chips, but not water. She says they are the same thing. Yes, Ally, it really is...I told her, but that's what the Dr. said. Tears and tears over not being able to drink. It's sad.

I was thankful to our visitors today who helped divert her attention from wanting a drink (and allowing me to go in the hall and get one for myself!) Gil, Ms Vicki, Ms Kim (thanks for lunch), Lisa and Morgan, Grandma and Grandpa, and sweet Nurses Lara, Susan, and Sharon who work in other areas of the hospital but came to see this sweet patient. Thank you Ms Vicki for the St Patrick's Day party supplies, I will post pictures tomorrow.

Most importantly, I want to wish Happy 30th Birthday to my sweet sister Melissa! She deserved the best birthday ever, but was nice enough to watch my son for part of it while I was at the hospital. Last year we spent her actual birthday making all the funeral arrangements for our mother. This year we got to have a nice dinner together with our Dad!

God is good and thank you for bringing some healing to my daughter! We still have quite some time left in the hospital....so lets hope it goes quickly and smoothly.

Monday, March 15, 2010

March 15

I have decided that I hate March 15th. I am going to try to explain what is going on with Ally, but I am exhausted after being up again...for the fourth night in a row. At about 4am last night, Ally was in so much pain that she was begging us to take her to the hospital. She had several violent vomiting episodes, yet again, and we were very scared...even considered calling for an ambulance for the first time, but didn't. After six hours in the ER, they determined that she was suffering from acute pancreatitis...her pancreatic enzymes are supposed to be somewhere around 200 and her's were 1800. The pancreas is inflammed and this also affects her blood sugars/insulin...the pancreas helps in digestion and explains why everything she ate was coming right back up. I couldn't figure out why it was also worse at night, but it was determined that part of it was because she was getting too much glucose through her TPN nutrition which ran at night..and aggravated the situation. In the ER her blood sugars were also super high (almost 500, should be 200) so they are figuring she is now in some sort of diabetic situation also. We are going to determine tomorrow if she needs insulin to regulate her for a while. She was also dehydrated, although had been drinking incessantly, this also being a sign of the diabetic state. She drank and drank and drank because of the situation. Luckily, all the pieces came together now and they can finally start trying to get her better....but it is going to take some time. Although I am upset that she has this, I am actually feeling better that we know what is going on. I had been very scared and this has actually been coming on for some time now. Her enzymes were elevated even last week. She has been suffering for a long time now.

The culprit behind all this: her PEG asparaginase shots. Those awful leg shots. This is one of the more uncommon side effects that it can cause, but it has done it with our girl. They are indicating she may have to go off the protocol and not get these shots again. She only had two more times to get them.

How do they fix it: only time can heal this really. They also must give her gut complete rest. That means nothing by mouth. NOTHING. Not even water. This is very hard for her to understand and she cried for a long while today just wanting a drink. I can't let her have it...a few ice chips. They are managing her pain with morphine and toporol. I have heard from several people that this is extremely painful..one nurse even telling us it is worse than childbirth in her opinion. Her pain seems under control now, but I am scared as we enter the night again.

They have to watch her pancreatic enzymes and hope they come back down, although they told us they could go up too. They don't know where she is at in the process. They are also scheduling an ultrasound of the pancreas tomorrrow. She will also need a blood transfusion and a change in needle in her port. Not too fun. They have discussed the possibility of having to switch to a NJ feeding system...where they insert a tube down her nose, bypass the pancreas and stomach completely, and feed her straight into her intestine. They would sedate her some for this process. I am really hoping she does not have to go this route. I am really hoping that she recovers soon. They are saying to plan on a "good week" of being here. It's gonna be hard, but we will manage with a little help from our Army.

I am glad she is here and getting the care she needs. She has seen most of her favorite nurses today and it makes it a little bit better. Amanda and Lincoln from our hospital family are right here with us and they helped me get through the day. Today being a very sad day for me as I lost my Mom last year on March 15. She is resting comfortably in heaven now. I am finishing this blog the same way that I started it: I hate March 15th.

PS I think visitors would be a nice distraction for Ally....trying to get her past thinking about the fact that she can not drink. Her ANC is high, so healthy visitors are welcome.

Sunday, March 14, 2010

Poor Ally

I feel terrible for our poor girl. She is pretty much in misery most of the day and ALL of the nights here since her chemo. I am fairly certain it is the methotrexate and it is causing severe belly pain for her...and at night causes some very violent vomiting. We haven't slept much at all since Wednesday night. It is really starting to show on her (well all of us). Her eyes are very sunken with purple rings around them. She just looks sick. And she is sick. It takes a lot for me to page the oncologist on call..especially over the weekend....but I did as I could not take seeing her in pain any longer. I talked it through with Dr B and he gave us a new med which is supposed to help with stomach spasms...which is what he thinks is going on with her. It may have helped slightly, but not too much.

As I said before, I knew this was coming. It took her eight days to recover from the last dose, which was lighter than this. Day 9 was ok (remember the bike??).. and then day 10 they hit her again. During the days, it is bearable, only a few bouts of tears with belly pain or leg pain. Generally on the couch all day, which gets old, but not sure what else to do. We are getting a few bites to eat in her. Not much, but something. But at night it is like Jekyll and Hyde or something. She is much more miserable. There is not much we can do to console her and she lies a lot of the night moaning and/or crying and/or vomiting. Jerad and I are both up..and then when we compare notes in the morning we realize that we have both gone in to help her about 5 times...usually one of us ends up sleeping with her for part of the night. We are completely exhausted.

She is still getting her nutrition through the IV. I have graduated to being able to prepare the bags/pumps on my own now...no home health care to assist me. I have it down pat now and have pages of instructions to follow if I get confused. But it honestly takes me no less than an hour to do it. I am pretty careful, but it is also a lot of stuff. I told Jerad that I could make a really good meal in an hour, but instead I am doing this and things are just not getting done around here as much. Although it is a pain, it is currently keeping her afloat, and giving her stomach a much-needed rest. She can just eat when she wants to.

I am sorry to report that she is not doing well. I almost feel bad telling people, but then I realize that no one feels as bad for her as I do. When people ask, I am honest and I really don't know any other way to be.

There is one piece of good news that I can report....she saved up her strength all day Saturday in order to attend her best friend Madison's birthday party Saturday night. I wasn't sure how it would go...but it was just a couple of girls and they were doing spa treatments. Very low key and perfect for her. I even went for part of the time to give pedicures to the girls. She ended up lasting a really long time....and I knew she was in good hands. (I do believe that this is the only place on earth that she would have gone that day...she even missed her annual family fun day at her school the same day.) I was happy that she lasted so long...diversion is a very good thing with these kids. Here she is getting her facial:

So I am praying praying praying that the worst of this cycle is over and that she can finally get some rest tonight...even up just a couple times would be good. Jerad and I are talking like we have a newborn again...trying to figure out any possible time that we can sleep. And on that note, I hear her crying already and must run....

UPDATE ON MON MORN: We ended up having to take her to the ER in the middle of the night. Let me rephrase that. She begged us to take her to the hospital as the pain was so severe. After testing in the ER, we found out she has pancreatitis...a side effect of this drug and the culprit behind the violent vomiting and pain. I am not sure what they even do about this, but they are currently in the process of admitting her. Please pray for her to be relieved from the pain.

Thursday, March 11, 2010

Hard day

Man it has been an extremely long day. Starting at the hospital at 8am. Somewhere around 11 am: the spinal tap. This time it was not good with Ally screaming screaming bloody murder the whole time. A few hours later..and a few more chemo doses and Ally seemed to be coming out of the stupor of the meds. A big puffy face with big puffy eyelids as they gave her a bolus of fluid before the spinal...on top of her TPN. She was allowed to eat...her usual: a half a taco (no lettuce) and a baked potato. She wheeled herself in a wheelchair down to the inpatient unit. She had made some things for Amanda...and wanted to see Lincoln....oh and I finally got to see Maggie today too when I made a trip down to the ICU. She got to see her nurse faves Nicole and Beth and Miss Susan(...who is always Ally's nurse in AHU.)

Dr Dole confirmed my suspicion that the methotrexate was causing the diarrhea (8 days worth) and the belly pain. I knew it. I wondered if the dose would stay the same or if they would have to increase it. They had to increase it. So now I am feeling I have another week of this pain ahead of me. It is not a good feeling. If 10 days worth put her onto TPN, then what will 20 days worth do?? I am preparing myself mentally. It is all I can do right now.

So we got home from the hospital about 4...the home health nurse came to our house shortly thereafter. We had to mix up the TPN and the doctors decided she needed something else called albumin to be infused when the TPN is running. (Ally's protein level was too low) As if this process wasn't hard enough, now we have added another bag and another pump and another 5 pounds to carry around. UGH. But the worst part is that we worked and worked and couldn't get the pumps to sync up and infuse properly. So at 8 pm our nurse called the doctor and he decided we could wait until tomorrow. Pharmacy would have to figure it out. Thank you Lord for that because at that point I was very close to collapsing from exhaustion.

Just a long crappy hard day. And I am sad to boot...lots of people got to see me cry today. Sorry about that to all of you! I usually can hold it together, but I am getting sad thinking about my mom...it will be one year ago on Monday. If it feels this bad today, not sure how I will function come Sunday and Monday. I am one of those "relivers" Always have been. I relive every moment that I was experiencing at this time last year. I remember it all, in detail. And I wish I could forget it.

To top it all off, shortly after I went to visit our girl Maggie in ICU, she had some major problems. They just transported her to Cincinnati a little while ago. Please pray extra hard for her and all the kids who are battling cancer.

Wednesday, March 10, 2010

TPN is started

My girl woke up on Tuesday morning and I think she felt a little better. She started eating a few things. This was all before they even brought her TPN (IV nutrition) out to us. It figures. The nutrition is on its way and right before that she decides to eat. I say that lightly because I truly do not think she is deciding at all. She is not purposefully not eating or anything like that. She was just getting in pain every single time that she did. I was just very happy that she decided to eat. Our home health care nurse came out with the big bag of proteins/fats/vitamins, etc and started to teach me how to assemble it all. It is a huge long process...took about an hour both days so far. There are all different things you have to mix up and then put in the bag and you have to be very careful. You have to be careful about not letting any air bubbles gets in, and measuring the right amounts of everything, and making sure your needles/ends don't touch anything because they are sterile. I also had to learn how to work the pump, install the tubing onto the pump....yada yada. It is a complete pain and hard to do and I am still not ready to do it on my own yet. Lucky for me, they give me three or four days of instructions. I am just so scared that I will forget something and then it goes straight into her port and then straight into her heart. STRESS. This is what it looks like peeking out of her backpack. yuck
The good news is that Ally doesn't get any of the stress of it (she has enough of her own)...so while we were inside doing all this scientific stuff.....this is what she was doing....
Seriously, I about died when she said she wanted to ride her bike. I went flying thru the garage to find an air pump to pump the tires that hadn't been used in 10 months. Helmet, check. Gave her a little push, got her going....my neighbor screaming over to me to get the camera....ran in to get that, tripped over the threshold to the back deck, leaned over the railing and YES! got the shot. I just noticed that sweet little girl even gave me a wave in the picture! It was such a big deal to me because she literally hasn't gotten on her bike since before she was diagnosed. Not once, not even a little try....and here she is.

She woke up again today with a bellyache. We were really trying for school. It just wasn't happening. At some point we have to get back into the routine. I think that is one of the hardest things about all of this...no routine. We did get into a small routine a few weeks back only to have it RIPPED out from under us for the 100th time. And for me, always a planner...always like to know what is going on....always like to have the freedom to leave my house...well it just isn't there anymore. I crave it and need it, but no. I have to deal with it and it is hard with two other kids, but lately the sunshine has made it seem more bearable. And Ally's lovely tutor, Mrs Brower, she just works around us all the time. So if there is no school, and Ally isn't in too much pain, we call her and they usually get an hour and half lesson in. I have tried so hard to keep Ally up on her lessons and make sure that she can stay in the grade that she is in, etc.

Really nothing matters much to me anymore when I think about our friend Davey....Jerad drove up to Greenville yesterday to go to his funeral on behalf of all us (me too scared to take Ally that far away) They had a beautiful almost 2 hour service to celebrate the life of their wonderful boy. He really was someone you can never forget.....these kids are all so full of life when they feel well. Even at the young age, they appreciate the good days and take full advantage! That is how Davey was. Never wallowing in misery or self pity....but having wheelchair races in the hall or playing the 10th game of UNO.

Thursday at 8am...we are back to CMC. Another spinal tap. More chemo. Monthly antibiotic infusion. Monthly IVIG infusion and generally a very long day. They will UP her dose of methotrexate yet again. I am hard pressed to even let them do it after seeing Ally have a bad 9 out of 10 days since the last dose. The increase has me scared, but I guess the leukemia has me more scared. So I have to let them do it....but who knows what kind of war it is going to wage on her little stomach. No leg shots this time, and I am hoping this makes the difference.

Thanks for all the support and suggestions that we have gotten on how to deal with the side effects. We appreciate the support and prayers more than you will ever know. Fingers crossed for a better 10 days.

Monday, March 8, 2010

Belly pain continuing

Well we have had quite the worrisome day. Well, me worrying anyway. Ally's belly pain is just not going away. Jerad got her all the way to school because she really wanted to go (and her ANC is 2350!)....she got there and was doubled over in pain so he brought her right back. She was still resisting all food. Quite frankly, because even if she eats a morsel of food it ends up being diarrhea. (sorry if that is too much information...but it is what it is). I knew her nutritionist (whom we love, Miss Shannon) was not happy with her weight loss too, so we went into the hospital today.

They did lots of tests...her normal bloodwork was good. She showed some malnourishment in her protein levels and potassium levels, but not dehydrated. They did an abdominal scan of her belly. They found nothing at all in her bowel. Literally nothing. Normally there would be some stray amounts of food...some air....but on her nothing. I remember with my Mom they were always worried about her digestive system shutting down when she wouldn't eat. I was glad that they didn't find any masses or any constipation (which I figured). We really didn't get much of an answer for the pain.

I was told AGAIN that I need to get her to eat, but I try!! I try so hard. I try like every 15 minutes all day. It is exhausting and stressful and I am always trying to whip something up or grab something for her. Of course, as soon as we get to the hospital, she decides she wants to order some food from the cafeteria. She ate half a taco (some protein) and a baked potato (loaded with potassium) with cheese. I about fell over. The most she has eaten in a long time and she also made a big fat liar out of me. Just kidding....I think they know me better than that.

They also decided to put her on an IV nutrition. Basically, she will get hooked up to IV nutrition support every night for 14 hours...530pm to 730 am. This doesn't go through the stomach, but they are hoping that some calories/protein will give her some energy and possibly stimulate her to eat again. And she will take the appetite stimulant drug to help her do that. We can do this through home healthcare and they are coming tomorrow afternoon to teach me how to do it, mix it up, etc. Another badge for my nurse's training. They are going to try it for a week and see how she does. I guess if they want it to go thru her stomach they have to insert a tube in her nose and feed her that way....preferable for the situation because it involves the digestive system, but I would rather not have to do that to her. Hopefully we don't have to go that route.

I just have the feeling that something is wrong and I hope some light is shed on our situation soon. It is too long to keep going in this pain and she has to get another (and higher dose) of the methotrexate on Thursday. I am scared it will send her over the edge. So much for me "liking" this phase. I take it back. I guess there is just no good phase until we are done with this rotten schedule and get back to our routine life.

I hope things turnaround soon. I want my Ally girl back. Please continue to pray for Maggie who has just finished her 9th day in ICU and does not seem to be making much improvement. And Amanda who just clocked day 8 in the inpatient unit with an infection in her port. Also for Davey's family who are putting their dear son to rest tomorrow morning. Our thoughts are with them.

As always, thanks to our loyal Ally's Army for the support and prayers.

Sunday, March 7, 2010

WSU Wins

Jerad and I had a really nice day Saturday...we had the whole day to kick back and relax and do all the things we used to like to do before we had kids. Slept in, worked out (at the same time!), grabbed coffee, shopping, lunch, more shopping, had a drink with a friend, basketball!, out to dinner at the cutest little restaurant, and then stayed up waaaayyy too late with our friends celebrating the big WSU win!!! (next game is on ESPN on Tuesday night...one more win and we go dancing...) We have not had this opportunity since before Ally was diagnosed last May...and it was really a nice break. It is funny how much more we appreciate things now. Especially getting to sleep a whole night through.

Thank you so much, Grandma and Grandpa, for allowing us this opportunity and taking wonderful care of our children in our absence. The kids were so excited to have Gma and Gpa all to themselves. Ally even remarked that this time, she would get to see them because she wasn't in the hospital. (usually when they come they just take care of Evan and Carly) Our three children, all of them, were practically pushing us out the door to leave. Hah. Ok then! It made it that much better for us to do so!

Ally is doing okay although I have now been with her almost an entire day and haven't seen her eat yet. I am really really starting to worry about this. How on earth can people survive for so long without food?? Just little bits today. Still having stomach pain and issues. She has to get more treatment in just a couple days so I am really feeling the pressure of getting as much food in her as I can. UGH....it is so hard. I was exceptionally happy today when I saw her riding down the sidewalk (a little slowly, but still) on her scooter!!! Remember when I was wishing wishing for this???

The warm weather has cheered us up and soon the time will change too. We are ready for some change and after all, we have one more season to go (Spring!) before Ally heads into maintenance. Please pray she makes it through with ease.

Friday, March 5, 2010

Friday update

Ally has now eaten some small bits. Tomato soup...a quarter of a grilled cheese sandwich....some crackers...a few bites of sherbet. All has stayed down. She is a bit perkier and complaining a little less. We opted to not take her back to the hospital. As parents, it is so hard to know when to draw the line and take her in. We put up with a lot more than we used to, that is for sure. I guess we have lived and learned. We usually just deal with it and have become pretty knowledgeable in the healthcare department. This chemo was hard. Four solid days of belly pain and blah! Maybe a couple more. Next Thursday they increase her dose yet again. That might just knock her out.

I am glad, however, that we have seen some improvement. The worry factor was getting a little too high for me, but now it is looking a little brighter.

Have a nice weekend. Good luck to the Raiders in their tournament game tomorrow! Barring any unforeseen circumstance, Jerad and I will be there to root them on.

Thursday, March 4, 2010

Good news, bad news

First: The good news. Evan's heart is absolutely fine. Woo hoo. We are so happy. Sweet Dr Ross came in to see him (we love love love his wife Nurse Sharon in the hem/onc clinic). It took a lot of listening to even hear anything. They gave him an EKG. The determination was that it is an "innocent" heart murmur..it may have been amplified a few weeks ago when he was sick. They don't even want to see him back for two years. The Dr. was soo soo kind to Evan. Everyone at Children's really seems to love children (as they should), but we very impressed with how much time he took with our son. Evan was sooooo nervous too, I could tell. But he did great and we went and got a Shamrock Shake from McD's to celebrate. Thank you God for protecting our other children as we wage this battle with Ally.

Now: The bad news. Ally is still suffering a lot. It is breaking me up to see her. She will not eat. I try to encourage her, but then she eats some small thing and just throws it back up. Tonight we tried two pepto bismol...threw those up too. She has not eaten in so long that it seems her body is rejecting everything. She doesn't want to eat, but we try to insist. She has held some plain white rice down this evening. She is also having diarrhea a lot. Jerad and I are scared she is getting dehydrated, but she did drink a fair amount today. I can definitely tell that they raised her methotrexate level. I hope she recovers soon, but we are considering taking her into the clinic tomorrow. We will see how the night goes. It just pains me to have her breaking into tears lots of times during the day because her stomach is in so much pain. She has lost 13 pounds in about 4-5 weeks. A LOT.

Thank you to my Grandma Ruth who sat right by her side today for over three hours while I took Evan to his appointment. What a lifesaver she is.

The kicker to the story is that Ally has been doing so good. Jerad and I finally decided that we would go away for the night (to Indy) and see WSU play their tournament game. Jerad's parents are coming to stay with the kids. We have never both left her, but we were gonna try it. We still may try it, I don't know. Jerad's parents are relentless that they are coming and want us to have a break. Not sure what we will do with a whole nights sleep. I can see the tiredness on Jerad when he actually fell asleep today during Evan's appointment right when the doctor was listening to Evan's heartbeat. I was on the edge of my seat frantic with worry and Jerad was asleep. If you saw how much he is up at night, you would know why.

Thank you for saying extra prayers for us and for Maggie and Lincoln (who was in the Dayton Daily News today!). We are so grateful to all of our followers and we still love to read your comments/suggestions.

Wednesday, March 3, 2010

With sadness I write...

It doesn't even seem appropriate that I am writing tonight. But I don't know what else to do and somehow things must keep going. We are having a really bad week, but it pales in comparison to the Lewis family. Ally's best little friend from the hospital, Davey, died suddenly last night in the middle of the night. He was her age and her friend and when she was in the hospital they spent a lot of time together. They played games a lot and carved their pumpkins together this year. At Christmastime, when she was given the opportunity to make a build-a-bear, she didn't make one for herself. She made one for Davey. They were both there together on Christmas Day. When we go to the clinic, we stop in to see Davey. He had AML and was in the hospital a lot...he was just finishing up his last chemo. He was almost done...just a few weeks left of inpatient after being diagnosed a couple months after Ally. His treatment was much shorter, but also harder. He got an infection that just took over his body. Last evening he was up on 4, quickly went to the PICU, and then passed very quickly. I got the news this morning, and it is extremely hard to bear. Again, I haven't even told Ally yet. I have to build up my strength, figure it out, and see if she can talk to some mental health people. Please don't ask her about it or mention it.

I tell you all of this about Davey because he was such a special boy. If there was a popularity contest in the hospital, this kid would have won it. He knew everybody...even the security guards downstairs. He was always goofing off in the hallway in a wheelchair..always coming into our room to just hang out. Jerad loved him, often playing games with him when Ally was too sick to play. We all loved him. And now, in the blink of an eye, he is gone. We will NEVER forget him. Tonight I am praying for his mother and father and brother and sister. How they go on I will never know.

Three other hem/onc patients were also in ICU last night. Maggie, Lincoln, and Carly are still fighting. I have really never even heard of more than 1 oncology patient being in there at a time. Now 4 were there just last night. It is breaking everyone at the hospital. It hurts.

And Ally. Well she is having a rough time. She cannot and will not eat. She ate a little ice cream tonight, after we begged her, and promptly threw it back up onto my Dad's driveway. (sorry) Her belly is hurting. She has yet to get to school. But she is home and we can bear it. Tomorrow we go for Evan's cardiologist visit. I will update when I know more, but I am honestly thinking it will be very minor. Really how much is too much to bear?!? We can't be given anything else right now. We just can't.

Monday, March 1, 2010

Dose 3, done.

Ally did make her counts today. ANC was 1350, so still going strong. But not for long. They increased her dose of methotrexate yet again with a warning that mouth sores could be around the corner. It was also determined that she is getting too thin again, she was down 3 more pounds in a week. So todays doc, Dr French, (Dr Broccoli is skiing in Colorado!) decided we should start the appetite stimulant again. His thoughts were that she needs some food in her body in order to keep up with the chemo, etc. I agreed.

I talked to my nurse friend Robbie today about all the bad stuff going on. She informed me that it is especially bad right now...a real downturn for our area. It is hard on all of us, but is really hard on the medical team trying to keep plugging through every day. Sometimes I don't know how they keep their chins up and their smiles on. But they do. And they are saints. She also said that usually after a downturn there is a period where really good things happen...an upturn. I am anxiously waiting for that.

Ally was doing okay with her chemo. That is until about 6:30 pm when lots of vomiting started. She did keep her bedtime snack of crackers down (so far.) I am anticipating a not-so-restful night with the joint pain and/or nausea. We are due back in the clinic at 930 am for the leg shots. I really can't wait until leg shots are a thing of my past. I have finally learned that it is best if I take my own wheelchair in....and I can get her out to the parking garage with ease.

Maggie is holding her own. Not out of the woods yet, but not worsening either. Thanks for asking about her.