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 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.

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.

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.

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.

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.

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.