We are headed to the hospital tomorrow morning early to see if we can start a new round of chemo. She has to have an ANC of 750 to start a new round. Today she was 700. Very close and they said "good chance" that she will be 750 by tomorrow. So she will get a finger prick first, just to see, and if she is a go they will access her port and begin. And thus, our final day of 2009 will consist of.......chemo. No surprise. She will get another spinal tap, which always brings me agitation, and then she will get Cytoxan..which has to be followed with 4-6 hours of fluid. It is going to be a very long day. She will also get her first of four days in a row of ARA-C. ARA-C is my least favorite of all the chemo drugs. It brings on fevers. And fevers mean hospital stays. She will get that tomorrow, New Years Day, and Jan 2and Jan 3.
I am ready to kick 2009 right out the door. As my brother-in-law Gavin said so nicely..."pack up your things 2009 and get on out of here" By far and away it was the worst year of my life and probably also for most of the people in my family and/or Jerad's family. So goodbye 2009. We are starting a whole new decade on Friday and I am quite ready to have a clean slate.
Please pray that Ally can start her chemo tomorrow. The love/hate relationship exists, but I want to keep going especially after her Aunt Jessica drives all the way here to take care of the kids for us. I would hate for it to be for nothing. Please continue to pray for all the kids who are fighting cancer and all their families who are also deeply affected by it.
UPDATED: We are at hospital and getting ready for spinal tap. She cleared the ANC number...it was 910. Poor girl is starving because she is not allowed to eat with the anethesia...hopefully going soon.
Wednesday, December 30, 2009
Monday, December 28, 2009
Christmas 2009
I have tried to give myself some time to cool down before I write about our Christmas misfortune. It was just unbelievable how it happened and I am still sort of in shock to be quite honest. I was preparing food for our Christmas Eve get together with family for much of the afternoon. Ally fell asleep in the chair watching a movie. This is a little unusual for her, but I still wasn't too alarmed. Actually, at 2 pm I talked to my Grandma Josie in Pennsylvania and told her we had made it. She would be home for Christmas. I had tried so hard to take every precaution to keep my girl healthy and protect her, and we had made it. Or so I thought.
When she woke up from this little nap, I thought she felt a little warm. I check her forehead every few hours. Always. So, I grabbed the thermometer, still not really worrying much but just making sure. 102. Exactly. I started shaking. I remember I kept saying No No No over and over again. I waited 10 minutes. 101.9. Jerad came home from some shopping and he took it. 101.9. We knew in our hearts we had to page the Dr. We knew she would have to go in. We knew she would miss Christmas Eve, but we really thought her counts would be high enough that they would treat her and send her home.
Evan and Carly and I went to spend Christmas Eve with my family. I tried to put on a happy face and just keep going. I was holding back a lot of tears though. We went to a nice church service and then went to my Dad's for appetizers and a couple of family gift exchanges. Jerad and Ally had a McDonald's dinner and sat in the ER. Waiting for her blood results to come back. I knew things were not good when Jerad told me her ANC was only 140...below the magic 200 level that mandates admittance. But we kept hoping. It was Christmas, after all. The ER doc called Dr B at home and asked what he should do. And at that point, whether it was Christmas or not, he had to do what was best for Ally's health. It was too risky to send her home with that low ANC.
Jerad called to tell me the news. I knew before he even said one word. The tone in his voice said so much. Ally was crying. My laid back Ally girl, who never lets much get to her, was crying. This rippled through right to me...I was on my knees back in my parents bedroom, sobbing, but knew I had to pull it together for the sake of my other two kids. After all, it was Christmas. I took them home...with a very long night ahead of me...and started getting everything together. My friend Suzanne came over late that night, as only a true friend could, and stayed with my kids while they slept. I packed up bags of stuff for Jerad and Ally...and got a tree together to take to my Ally's hospital room. Suzanne stayed and helped me get gifts out and did all my dishes from the frantic scene earlier in the day.
For me, that was the worst part. Driving to the hospital at 11pm on Christmas Eve, with it raining on my windshield, with a tree and a few presents in the back of the car. Knowing that all the other children were snug in their beds with sugarplums dancing, yada yada. I was just furious. Angry. Mad. How could this happen to my family and how could our luck for the year get any worse. It can always get worse. And not to be Ms. Negative, but we have come to realize that we do INDEED have bad luck.
So at midnight, I finished putting up the tree in room 417 at the hospital. I kissed half of my family goodbye. Worked out some details, and went back home. And started doing all the Christmasey stuff at home all by myself. The stockings, the gifts....I always feel so bad for people that are alone on Christmas Eve. And now I was one of them. I went to bed alone somewhere in the middle of the night, and woke up at 7 to shower and pack everything in the car...I let the kids open just a few items from Santa...plus the ones he left unopened...and then I packed up almost everything but the kitchen sink into the car. I knew we wouldn't be able to eat much (nothing open) so I am packing food, presents, I even packed my coffee maker. Just trying to make it homey.
Santa also made a visit to Dayton Children's. He went from room to room and brought Ally the gift that she most wanted this year: Mindflex. It is a crazy game that uses your brain waves to move a little ball around an obstacle course. But he delivered it right to her hospital bed. I love Santa.
We pulled several wagonfuls of stuff up and had our Christmas in the lounge on the Hemoc floor under the Christmas tree that they had set up there. For Synergy's Christmas gift this year, we had just decided to donate the funds so that the lounge/kitchen on that floor could be remodeled. Quite ironic that it was now the scene of our Christmas. They reserved it for us for the whole day. We opened about half of our presents....because Santa had left us that note that he WOULD be coming back when Ally came home from the hospital. I never knew Santa could be so understanding. The best part of the day was that lots of people came to visit us there. My group of friends that I call my family of 13 came (Wingers and Boohers). Jerad's sister and her family drove all the way from Junction City (2 hours) just to get a visit in. My sister also came down. And a few of our hospital family just stopped in that day too (even though they weren't there). I even met a family there who now has a survivor and that brought me some hope.
So we didn't have the best start to our day. We didn't much have a Christmas dinner. We were in a bit of chaos all day. And we didn't have any snow (RAIN!), darnit. But we did have a day filled with a lot of love. We have never gotten to see our friends on Christmas, but this year we did. We rarely see the Colombinis on Christmas, but this year we did. And those things were a huge blessing. Ally was feeling well enough to enjoy the celebration that we had...and that was better than the whole week prior.
My sister and I were contemplating as to why everything happened the way it did. All of this, and it was our first year without our Mom. Which in itself, is about the worst feeling possible. So we are wondering if this happened, so that we wouldn't focus on our sadness caused by her not being with us. The craziness of the day did not allow much room for the sadness of life without our mom to creep in.
Ally was released from the hospital on the morning of the 26th. She spent 42 hours in the hospital. Of course, that was the most important 42 hours of the whole year if you are an eight year old girl. (or if you are the parent to that child) We did have Christmas...we set out cookies for Santa on the night of the 26th. He ate them! He came back and filled the stockings again! He left a few more presents for three kids who deserved a little bit extra this year. And all was merry and bright and I even got a few pictures...and maybe someday we will forget this whole thing happened. Oh, wait, probably not.
And we had a wonderful evening up at my Dad's house celebrating Christmas again. We cooked up some lobster (never done that before) and tried to celebrate as best we could. And we got the gift that makes my sister and I so so happy. It snowed. And it snowed. And it snowed. My Mom loved the snow so much and always instilled it in my sister and I. And we kept running to the windows like little kids to look out. And we kept saying...Mom is sending the snow for us. On this day...our Christmas. And it turned out to be a white Christmas afterall. And maybe that is the reason for our Christmas delay.
The bottom line is this: it doesn't matter where you are or what day it is but who you are with. And the weather. The weather also matters. Just ask my sister.
Here are some pictures, not the greatest picture taker in the middle of chaos.
Carly got a Hello Kitty Gumball Machine, which is all she really needed. And some Hello Kitty bedding for her big girl bed. And a Hello Kitty umbrella and a Hello Kitty purse. You get the idea. Evan LOVED these vintage Star Wars toys. I have never seen him so happy. Good old-fashioned, no technology toys. Love it.
Ally got some special new nail stuff...trying it out on Aunt Melissa.
Several new hats for Ally...
My LOVELY LOVELY family of 13 (okay 12, Caulin was missing)
Christmas on the 27th...good times.
At Pa's house...
And the glory of snow. The beauty of the snow helped it all....
When she woke up from this little nap, I thought she felt a little warm. I check her forehead every few hours. Always. So, I grabbed the thermometer, still not really worrying much but just making sure. 102. Exactly. I started shaking. I remember I kept saying No No No over and over again. I waited 10 minutes. 101.9. Jerad came home from some shopping and he took it. 101.9. We knew in our hearts we had to page the Dr. We knew she would have to go in. We knew she would miss Christmas Eve, but we really thought her counts would be high enough that they would treat her and send her home.
Evan and Carly and I went to spend Christmas Eve with my family. I tried to put on a happy face and just keep going. I was holding back a lot of tears though. We went to a nice church service and then went to my Dad's for appetizers and a couple of family gift exchanges. Jerad and Ally had a McDonald's dinner and sat in the ER. Waiting for her blood results to come back. I knew things were not good when Jerad told me her ANC was only 140...below the magic 200 level that mandates admittance. But we kept hoping. It was Christmas, after all. The ER doc called Dr B at home and asked what he should do. And at that point, whether it was Christmas or not, he had to do what was best for Ally's health. It was too risky to send her home with that low ANC.
Jerad called to tell me the news. I knew before he even said one word. The tone in his voice said so much. Ally was crying. My laid back Ally girl, who never lets much get to her, was crying. This rippled through right to me...I was on my knees back in my parents bedroom, sobbing, but knew I had to pull it together for the sake of my other two kids. After all, it was Christmas. I took them home...with a very long night ahead of me...and started getting everything together. My friend Suzanne came over late that night, as only a true friend could, and stayed with my kids while they slept. I packed up bags of stuff for Jerad and Ally...and got a tree together to take to my Ally's hospital room. Suzanne stayed and helped me get gifts out and did all my dishes from the frantic scene earlier in the day.
For me, that was the worst part. Driving to the hospital at 11pm on Christmas Eve, with it raining on my windshield, with a tree and a few presents in the back of the car. Knowing that all the other children were snug in their beds with sugarplums dancing, yada yada. I was just furious. Angry. Mad. How could this happen to my family and how could our luck for the year get any worse. It can always get worse. And not to be Ms. Negative, but we have come to realize that we do INDEED have bad luck.
So at midnight, I finished putting up the tree in room 417 at the hospital. I kissed half of my family goodbye. Worked out some details, and went back home. And started doing all the Christmasey stuff at home all by myself. The stockings, the gifts....I always feel so bad for people that are alone on Christmas Eve. And now I was one of them. I went to bed alone somewhere in the middle of the night, and woke up at 7 to shower and pack everything in the car...I let the kids open just a few items from Santa...plus the ones he left unopened...and then I packed up almost everything but the kitchen sink into the car. I knew we wouldn't be able to eat much (nothing open) so I am packing food, presents, I even packed my coffee maker. Just trying to make it homey.
Santa also made a visit to Dayton Children's. He went from room to room and brought Ally the gift that she most wanted this year: Mindflex. It is a crazy game that uses your brain waves to move a little ball around an obstacle course. But he delivered it right to her hospital bed. I love Santa.
We pulled several wagonfuls of stuff up and had our Christmas in the lounge on the Hemoc floor under the Christmas tree that they had set up there. For Synergy's Christmas gift this year, we had just decided to donate the funds so that the lounge/kitchen on that floor could be remodeled. Quite ironic that it was now the scene of our Christmas. They reserved it for us for the whole day. We opened about half of our presents....because Santa had left us that note that he WOULD be coming back when Ally came home from the hospital. I never knew Santa could be so understanding. The best part of the day was that lots of people came to visit us there. My group of friends that I call my family of 13 came (Wingers and Boohers). Jerad's sister and her family drove all the way from Junction City (2 hours) just to get a visit in. My sister also came down. And a few of our hospital family just stopped in that day too (even though they weren't there). I even met a family there who now has a survivor and that brought me some hope.
So we didn't have the best start to our day. We didn't much have a Christmas dinner. We were in a bit of chaos all day. And we didn't have any snow (RAIN!), darnit. But we did have a day filled with a lot of love. We have never gotten to see our friends on Christmas, but this year we did. We rarely see the Colombinis on Christmas, but this year we did. And those things were a huge blessing. Ally was feeling well enough to enjoy the celebration that we had...and that was better than the whole week prior.
My sister and I were contemplating as to why everything happened the way it did. All of this, and it was our first year without our Mom. Which in itself, is about the worst feeling possible. So we are wondering if this happened, so that we wouldn't focus on our sadness caused by her not being with us. The craziness of the day did not allow much room for the sadness of life without our mom to creep in.
Ally was released from the hospital on the morning of the 26th. She spent 42 hours in the hospital. Of course, that was the most important 42 hours of the whole year if you are an eight year old girl. (or if you are the parent to that child) We did have Christmas...we set out cookies for Santa on the night of the 26th. He ate them! He came back and filled the stockings again! He left a few more presents for three kids who deserved a little bit extra this year. And all was merry and bright and I even got a few pictures...and maybe someday we will forget this whole thing happened. Oh, wait, probably not.
And we had a wonderful evening up at my Dad's house celebrating Christmas again. We cooked up some lobster (never done that before) and tried to celebrate as best we could. And we got the gift that makes my sister and I so so happy. It snowed. And it snowed. And it snowed. My Mom loved the snow so much and always instilled it in my sister and I. And we kept running to the windows like little kids to look out. And we kept saying...Mom is sending the snow for us. On this day...our Christmas. And it turned out to be a white Christmas afterall. And maybe that is the reason for our Christmas delay.
The bottom line is this: it doesn't matter where you are or what day it is but who you are with. And the weather. The weather also matters. Just ask my sister.
Here are some pictures, not the greatest picture taker in the middle of chaos.
Carly got a Hello Kitty Gumball Machine, which is all she really needed. And some Hello Kitty bedding for her big girl bed. And a Hello Kitty umbrella and a Hello Kitty purse. You get the idea. Evan LOVED these vintage Star Wars toys. I have never seen him so happy. Good old-fashioned, no technology toys. Love it.
Ally got some special new nail stuff...trying it out on Aunt Melissa.
Several new hats for Ally...
Carly (or Ally) could try out her new bike in the hospital corridors...
My LOVELY LOVELY family of 13 (okay 12, Caulin was missing)
Christmas on the 27th...good times.
At Pa's house...
And the glory of snow. The beauty of the snow helped it all....
Saturday, December 26, 2009
December 26th, the night before Christmas
Just a quick post here to let you know that Ally was released from the hospital today. We were actually home around noon on the 26th. She got the fever on Christmas Eve at 4pm....and never got a fever again after that night. Unfortunately, they did admit her for about 42 hours. And those 42 hours were the same hours that contained Christmas Eve and Christmas Day. And then the day after, they felt her white blood cells were recovering enough that they sent her home (although ANC is still a mere 60). I think her fever was just caused by her low ANC...the schedule didn't so much work out like I thought it was going to. It is definitely a tough pill to swallow....I keep wondering why it happened the way it did. That is what I do. I got very angry. VERY ANGRY. But I have since resolved my anger. I will share more about our Christmas tomorrow, when I am not exhausted. It really didn't end up as terrible as you might think...thanks to some very thoughtful people.
The good news is this: Did you know that Santa will come to your house again if you have an emergency like that? He would never leave anybody out. He is Santa, after all. He left us a note on Christmas Eve. It said this:
And Santa is coming tonight!!! I believe. I believe.
The good news is this: Did you know that Santa will come to your house again if you have an emergency like that? He would never leave anybody out. He is Santa, after all. He left us a note on Christmas Eve. It said this:
And Santa is coming tonight!!! I believe. I believe.
Friday, December 25, 2009
Christmas Eve
Yep it happened. Ally is in the hospital on Christmas. Got a fever at 4pm on Christmas Eve and I knew right away my nightmare was coming true. I took her a tree and her Christmas jammies. I don't even know what to say. Just sad.
Wednesday, December 23, 2009
Christmas Wishes
Picture/Card courtesy of the one, the only, Erin Cobb.Tuesday, December 22, 2009
Vincristin
I am sorry to report that our Ally is really suffering the effects of a month long round of Vincristin. Being at the end of the round, it has all piled up and compounded in her system. My loyal followers may remember how it affected her the first month... and once again we are seeing all the effects again. Belly pain/constipation... joint pain/back pain...lack of sleeping...and not removing herself from the couch. She is having trouble walking as her knees hurt so bad, it is a struggle just to walk to the bathroom. I took the kids over to my sister's house today so that I could run to the grocery store and I seriously considered carrying her into the house. She has gained quite a bit of weight from the steroids, so I reconsidered and she made it in to their couch on her own.
I wish I could report better news, but it is what it is. We are waiting for her to come out of the steroid fog. I am thinking that she is maybe about 10% better today...just a smidgen of talking instead of none. We spent our afternoon trying to do a 500 piece puzzle, whew. And I should have been doing a thousand other things, but I just sat right with her and rubbed her knees. I feel so bad for her...I am always wanting to take her pain away. She has been refusing the Tylenol with Codeine (a lot of kids take it just to sleep) but tonight somehow we coerced her to take it. I hope it works. My dear husband was up with her last night and they both tried to sleep in the recliners but weren't too successful. He also gave me a break this evening and sent Evan and I to the WSU game. It's always good to get out. Which reminds me that I have to go tell him to go to bed right now, because we both keep staying up until 1am every night trying to get holiday stuff done. I am ready for January to arrive.
I am hoping that these side effects get better and not worse so that we can try to enjoy Christmas with a happy girl.
I wish I could report better news, but it is what it is. We are waiting for her to come out of the steroid fog. I am thinking that she is maybe about 10% better today...just a smidgen of talking instead of none. We spent our afternoon trying to do a 500 piece puzzle, whew. And I should have been doing a thousand other things, but I just sat right with her and rubbed her knees. I feel so bad for her...I am always wanting to take her pain away. She has been refusing the Tylenol with Codeine (a lot of kids take it just to sleep) but tonight somehow we coerced her to take it. I hope it works. My dear husband was up with her last night and they both tried to sleep in the recliners but weren't too successful. He also gave me a break this evening and sent Evan and I to the WSU game. It's always good to get out. Which reminds me that I have to go tell him to go to bed right now, because we both keep staying up until 1am every night trying to get holiday stuff done. I am ready for January to arrive.
I am hoping that these side effects get better and not worse so that we can try to enjoy Christmas with a happy girl.
Monday, December 21, 2009
Christmas Miracle
Early this morning Jerad took Ally to the blood lab for a scheduled finger prick/blood count. He went early, because we felt about 90% certain that she would need a blood transfusion today and we would be headed to Children's. Her hemoglobin was low last week, and with the chemo they gave her we thought it would only go lower.
About 11:30am we found out that she did NOT need a transfusion!!! I kept calling it my Christmas miracle. How nice to not have to go there this week. I seriously was choking back tears when our nurse Robbie was telling me her numbers. Her ANC was also higher...over 1000...which is a good hedge of protection with the holidays coming. Robbie said "Merry Christmas" and I said "yea, this really makes it much better for us." She explained that Ally's bone marrow must have started producing some red blood cells and then she told me that that is exactly what they want it to do. And by the grace of God we changed our plans and went and got ice cream instead.
She is still in her sad/emotionless/silent stupor. I tried to engage her in several projects throughout the day. We made a few Christmas ornaments and I also let the kids do their gingerbread trees. (I am glad I am done with that mess until next year.) But anyway, nothing warranted a smile or a conversation or anything and by the end of the day I was actually crying. I felt so bad because I bent over backwards all day to try to please her, but I felt like I failed. And those who know me know that I don't handle failure well. Ah well...the steriods are done as of last night. Last time it took about five days for her to come out of this and be back to herself. And that should hit right about Christmas Day. Pray for us!
I was surprised by the large number of emails/comments/posts etc about my "Better Days" song that I posted yesterday. I had no idea that it would touch so many people. Most of the people that it touched were fellow cancer survivors/families and I was so happy that you liked it. I never want to post things that can be depressing, but I know that I do just by telling the truth of our story. I questioned posting the song, but now I am so glad that I did. Anything I can do to help even one other person is worth it to me.
Two prayer requests for two little hospital friends: Baby Lincoln is having a rough time. We love that little guy and he can bring joy to our face in an instant. And a friend of a friend, Skye Getter, who is actually in Cincy right now and suffering terribly from her chemo after another relapse of her kidney cancer. She is a friend of Ally's friend Jackie, who also has kidney cancer. We haven't met her, but I read her Mom's blog everyday and pray for her much.
Thanks for all the support and love and hope everyone enjoyed this first day of winter. (I can't believe it is winter.)
About 11:30am we found out that she did NOT need a transfusion!!! I kept calling it my Christmas miracle. How nice to not have to go there this week. I seriously was choking back tears when our nurse Robbie was telling me her numbers. Her ANC was also higher...over 1000...which is a good hedge of protection with the holidays coming. Robbie said "Merry Christmas" and I said "yea, this really makes it much better for us." She explained that Ally's bone marrow must have started producing some red blood cells and then she told me that that is exactly what they want it to do. And by the grace of God we changed our plans and went and got ice cream instead.
She is still in her sad/emotionless/silent stupor. I tried to engage her in several projects throughout the day. We made a few Christmas ornaments and I also let the kids do their gingerbread trees. (I am glad I am done with that mess until next year.) But anyway, nothing warranted a smile or a conversation or anything and by the end of the day I was actually crying. I felt so bad because I bent over backwards all day to try to please her, but I felt like I failed. And those who know me know that I don't handle failure well. Ah well...the steriods are done as of last night. Last time it took about five days for her to come out of this and be back to herself. And that should hit right about Christmas Day. Pray for us!
I was surprised by the large number of emails/comments/posts etc about my "Better Days" song that I posted yesterday. I had no idea that it would touch so many people. Most of the people that it touched were fellow cancer survivors/families and I was so happy that you liked it. I never want to post things that can be depressing, but I know that I do just by telling the truth of our story. I questioned posting the song, but now I am so glad that I did. Anything I can do to help even one other person is worth it to me.
Two prayer requests for two little hospital friends: Baby Lincoln is having a rough time. We love that little guy and he can bring joy to our face in an instant. And a friend of a friend, Skye Getter, who is actually in Cincy right now and suffering terribly from her chemo after another relapse of her kidney cancer. She is a friend of Ally's friend Jackie, who also has kidney cancer. We haven't met her, but I read her Mom's blog everyday and pray for her much.
Thanks for all the support and love and hope everyone enjoyed this first day of winter. (I can't believe it is winter.)
Sunday, December 20, 2009
Silent Night (and Day)
Trying to summarize our weekend here on Sunday night. Where do I start....Jerad and the other kids were gone for the weekend. I stayed home with Ally. And I would love to paint a Norman Rockwell-esque picture of Ally and I doing all kinds Christmas merrymaking...but it just wasn't meant to be. I will just be grateful that we made some good holiday memories earlier in the month. Ally really seems to be suffering from the steriods...now we have two full weeks worth put into her body over the last three weeks. They really bring her down and we spent almost the entire weekend in utter silence. Emotionless. No smiles, no words, even pulling away from both Jerad and I as we try to give her a little squeeze or a kiss. It is almost as if she has a fog all around her, and I can't get to her. Communication is pretty hard...about the only time she spoke was to ask for a certain food. She was asking for all kinds of grand foods almost every hour. And making food all day long can tend to get to me too....but it is better than the alternative I always remind myself.
I know it could be much much worse right now. It is sort of sad to say, but that is what I focus on sometimes. Instead of thinking about better times, I instead think about worse times and try to rationalize in my head that everything is all good at the moment. Even though it could be worse, it could really be so much better too. We could have our normal lives back and not have to deal with any of this. I have to say it is quite painful as a Mom to see your child in the state that Ally is in. ESPECIALLY at Christmastime when most kids have all that magic dancing in their eyes and you can just sense their excitement building. We don't really have any of that. When all the other kids line up for Santa, we pretty much have to pull her over and she painstakingly goes through the routine with him. Every picture I have taken lately is of her with this really forced smile. You will see it in my video below.
I should not complain, but it has been a really hard weekend for me. Seeing my daughter like this hurts. Being confined in the house during the holidays...VERY DIFFICULT. I missed going places with friends and family and doing all the things normal people do. Ally's counts are so low right now...we had to skip some of our favorites: WSU game, church, shopping, parties, etc. I do owe a huge thank you to Lisa Wygant for having Ally over to her condo on Saturday so I could do some last minute Christmas errands(...and I am still not done. UGH.) And I owe another huge thank you to my elf friend Jenny Zollars who stopped by, picked up a load of gifts, wrapped them all, and brought them right back. People are so kind to help us through. And thank you to all the other offers I got too...
Last week we were driving around looking at Christmas lights and a song came on the radio. It is called "Better Days" and I distinctly remember listening to it last year...with everything going with Mom...and hoping that this Christmas would be different and better in 2009. I even copied down the words and sent them to my friends Suzanne and Nicki one night. But that was LAST year. And no, things are not better, but worse. I remember thinking that the only gift I wanted was my mom...and I got it momentarily, but then that was it. So this year, when it came on, my wish has changed. The only gift I want this year is my daughter. I want my Ally back and the cancer to be gone forever. The gift that only God can give me. She is ultimately his, but I would like to borrow her for a very long time. Here are the words....they hold so true for me. And the song is the in the slide show below.
And you asked me what I want this year
and I try to make this kind and clear
just a chance that maybe we'll find better days
'cause I don't need boxes wrapped in strings
and designer love and empty things
just a chance that maybe we'll find better days
So take these words and sing out loud
'cause everyone is forgiven now
'cause tonight's the night the world begins again
I need some place simple where we could live
and something only you can give
and that's faith and trust and peace while we're alive
and the one poor child who saved this world
and there's ten million more who probably could
if we all just stopped and said a prayer for them
So take these words and sing out loud
'cause everyone is forgiven now
'cause tonight's the night the world begins again
I wish everyone was loved tonight
and somehow stop this endless fight
just a chance that maybe we'll find better days
So take these words and sing out loud
'cause everyone is forgiven now
'cause tonight's the night the world begins again
'cause tonight's the night the world begins again
And here is a slideshow I created of our past two weekends in pictures. To remember. Because I am all about remembering....
I know it could be much much worse right now. It is sort of sad to say, but that is what I focus on sometimes. Instead of thinking about better times, I instead think about worse times and try to rationalize in my head that everything is all good at the moment. Even though it could be worse, it could really be so much better too. We could have our normal lives back and not have to deal with any of this. I have to say it is quite painful as a Mom to see your child in the state that Ally is in. ESPECIALLY at Christmastime when most kids have all that magic dancing in their eyes and you can just sense their excitement building. We don't really have any of that. When all the other kids line up for Santa, we pretty much have to pull her over and she painstakingly goes through the routine with him. Every picture I have taken lately is of her with this really forced smile. You will see it in my video below.
I should not complain, but it has been a really hard weekend for me. Seeing my daughter like this hurts. Being confined in the house during the holidays...VERY DIFFICULT. I missed going places with friends and family and doing all the things normal people do. Ally's counts are so low right now...we had to skip some of our favorites: WSU game, church, shopping, parties, etc. I do owe a huge thank you to Lisa Wygant for having Ally over to her condo on Saturday so I could do some last minute Christmas errands(...and I am still not done. UGH.) And I owe another huge thank you to my elf friend Jenny Zollars who stopped by, picked up a load of gifts, wrapped them all, and brought them right back. People are so kind to help us through. And thank you to all the other offers I got too...
Last week we were driving around looking at Christmas lights and a song came on the radio. It is called "Better Days" and I distinctly remember listening to it last year...with everything going with Mom...and hoping that this Christmas would be different and better in 2009. I even copied down the words and sent them to my friends Suzanne and Nicki one night. But that was LAST year. And no, things are not better, but worse. I remember thinking that the only gift I wanted was my mom...and I got it momentarily, but then that was it. So this year, when it came on, my wish has changed. The only gift I want this year is my daughter. I want my Ally back and the cancer to be gone forever. The gift that only God can give me. She is ultimately his, but I would like to borrow her for a very long time. Here are the words....they hold so true for me. And the song is the in the slide show below.
And you asked me what I want this year
and I try to make this kind and clear
just a chance that maybe we'll find better days
'cause I don't need boxes wrapped in strings
and designer love and empty things
just a chance that maybe we'll find better days
So take these words and sing out loud
'cause everyone is forgiven now
'cause tonight's the night the world begins again
I need some place simple where we could live
and something only you can give
and that's faith and trust and peace while we're alive
and the one poor child who saved this world
and there's ten million more who probably could
if we all just stopped and said a prayer for them
So take these words and sing out loud
'cause everyone is forgiven now
'cause tonight's the night the world begins again
I wish everyone was loved tonight
and somehow stop this endless fight
just a chance that maybe we'll find better days
So take these words and sing out loud
'cause everyone is forgiven now
'cause tonight's the night the world begins again
'cause tonight's the night the world begins again
And here is a slideshow I created of our past two weekends in pictures. To remember. Because I am all about remembering....
Thursday, December 17, 2009
Christmas Shopping Day
Another day closer to Christmas break. Tomorrow is her last day of school for a while! While most parents may look upon the time off as a bit of a burden (how do they fill the days?) I now look at it in quite a different light. I am so looking forward to it. It relieves me from a lot of stress..I don't have to send her into the germs, and I don't have to worry about her missing anything either. Don't get me wrong, I like for her to go to school. But I also like when we don't have to worry about it. It is so so stressful for me to wake up every morning and just not know. I never know how she will feel, if she will go, if she will resist, etc. So now we can just sleep in and hang out and HOPEFULLY remain well.
Ally is not looking so hot these days. I went in to school today and had lunch with her in the cafeteria. She loves when I go to school, but it is hard for me to do so with also having a two year old. Anyway, she just looks tired all of the time. She has deep circles under her eyes. The tops of her eyes are red and basically very sad looking to me. She had a very sad demeanor about her now, but again it is all caused by the steroid. The decadron really pulls her down and also prevents her from sleeping at night. I also have the dark circles under my eyes, you might notice. I think I have aged 10 years in 2009. Really.
One of my kids favorite days in Christmas years past was to go shopping with their Ma and Pa. They always head to Target and they each pick out a gift for me and Jerad. They then go out to eat (Red Robin) and back to MaPa's to wrap the gifts. Well, today was shopping day! Of course, Ma wasn't there this year, but Pa took care of the whole day...he brought a friend to help him along. Which is good when you have two five year old boys (my sister's boy went too). I was leary to let Ally go....she shouldn't have gone with her counts so low....but the Dr's always tell us if there is something that is really important to the child, you have to let them do it. And this would fall in that category. So against my better anti-germ judgement, I let her go. I stressed a lot of hand washing to my Dad. They came back happy and crawled right into bed.
I am looking forward to spending the weekend with my first born girl. I love to have time with her just to myself. Even if we are trapped in the bubble again. Our friends will visit and maybe we will have a sleepover in my room.
Ally is not looking so hot these days. I went in to school today and had lunch with her in the cafeteria. She loves when I go to school, but it is hard for me to do so with also having a two year old. Anyway, she just looks tired all of the time. She has deep circles under her eyes. The tops of her eyes are red and basically very sad looking to me. She had a very sad demeanor about her now, but again it is all caused by the steroid. The decadron really pulls her down and also prevents her from sleeping at night. I also have the dark circles under my eyes, you might notice. I think I have aged 10 years in 2009. Really.
One of my kids favorite days in Christmas years past was to go shopping with their Ma and Pa. They always head to Target and they each pick out a gift for me and Jerad. They then go out to eat (Red Robin) and back to MaPa's to wrap the gifts. Well, today was shopping day! Of course, Ma wasn't there this year, but Pa took care of the whole day...he brought a friend to help him along. Which is good when you have two five year old boys (my sister's boy went too). I was leary to let Ally go....she shouldn't have gone with her counts so low....but the Dr's always tell us if there is something that is really important to the child, you have to let them do it. And this would fall in that category. So against my better anti-germ judgement, I let her go. I stressed a lot of hand washing to my Dad. They came back happy and crawled right into bed.
I am looking forward to spending the weekend with my first born girl. I love to have time with her just to myself. Even if we are trapped in the bubble again. Our friends will visit and maybe we will have a sleepover in my room.
Wednesday, December 16, 2009
Holding on
Our girl is holding her own as of late. With her blood levels balancing precariously on the edge of needing a tranfusion, three rounds of chemo currently in her body, and attending school basically full time, I have to wonder how much more she can do. Every morning I wake up waiting for the ball to drop, but she keeps on going. She actually asked to go to bed tonight at 8pm. I never know when to push her or let her fall back....it is a tough call to make as a parent...but the little bit of pushing has seemed to help her this time. The doctors always say that the more active she is, the better everything goes. It she doesn't move, her joints start freezing up from the chemo and basically everything slows down in her body. We will keep on going...two more days until Christmas break. I am saying multiple prayers a day that she does not get sick just in time to miss my Dad's Christmas party.
One thing that I have noticed about her lately is her reluctance to play. She has pretty much forgotten how to do it. I know she has her crafts, which are still going strong, and nails and such. But she really never plays. Whereas in the past, she would love to play with her friends, now I find her staying much closer to me. She chooses to hang out with the adults over the kids quite a bit. In the past she would jump at the chance to play with a friend after school, and now it can take some convincing. It is just another sad side effect of this whole thing. Her childhood is pretty much gone, at least for the time being, and I am not sure it is coming back. She is faced with so much and it is quite a bit of a burden for an eight year old to carry. She has always been mature, but this has taken her over the top. I do find myself daydreaming of the times when she will ride her bike again or run or dance or just be a kid. I hope it comes. It is quite difficult to not see your child do these things.
But it could always be worse. I know this. The hemoc area lost another patient this week. A 17 year old boy who had what Ally has....ALL. I hate that any parent would have to go through this. He was just diagnosed in October...and only lived two months. Last night, I could not sleep. (Well, this is pretty much every night for me.) But last night I just kept having vision's of John's Dad. He was always there with his son, he rarely (if ever) left his side. I didn't know him too much, but we exchanged stories and commiserated in the hallway a few times. Why, oh why, does this keep happening......
I was overwhelmed by people emailing me or commenting on the blog and offering up their help to get me through to Christmas. The crazy thing is several of the people I have never met or only met once. But everyone wants to help and we are so lucky for it. And even crazier, Janel said YES. I am actually letting people help me, which is probably what I should do more of...I am realizing. This may mean that I will get to bed before 2am and will be fresh and ready to go when Ally calls me into her room at 3am. And 4am. Hah.
Right now, we are just trying to hold on until Monday for a blood test and see where we are for that transfusion. And by the very grace of God, Ally does not get chemo again until the 28th. It just happened to be how the protocol was set up. And it is the only week skipped on purpose through this whole thing (all others were delays because her counts were too low). What a very special gift we got in that schedule. A greater power is working. Keep working....keep working... on saving my girl and bringing back that little girl I once knew who knows how to ride her bike and PLAY.
One thing that I have noticed about her lately is her reluctance to play. She has pretty much forgotten how to do it. I know she has her crafts, which are still going strong, and nails and such. But she really never plays. Whereas in the past, she would love to play with her friends, now I find her staying much closer to me. She chooses to hang out with the adults over the kids quite a bit. In the past she would jump at the chance to play with a friend after school, and now it can take some convincing. It is just another sad side effect of this whole thing. Her childhood is pretty much gone, at least for the time being, and I am not sure it is coming back. She is faced with so much and it is quite a bit of a burden for an eight year old to carry. She has always been mature, but this has taken her over the top. I do find myself daydreaming of the times when she will ride her bike again or run or dance or just be a kid. I hope it comes. It is quite difficult to not see your child do these things.
But it could always be worse. I know this. The hemoc area lost another patient this week. A 17 year old boy who had what Ally has....ALL. I hate that any parent would have to go through this. He was just diagnosed in October...and only lived two months. Last night, I could not sleep. (Well, this is pretty much every night for me.) But last night I just kept having vision's of John's Dad. He was always there with his son, he rarely (if ever) left his side. I didn't know him too much, but we exchanged stories and commiserated in the hallway a few times. Why, oh why, does this keep happening......
I was overwhelmed by people emailing me or commenting on the blog and offering up their help to get me through to Christmas. The crazy thing is several of the people I have never met or only met once. But everyone wants to help and we are so lucky for it. And even crazier, Janel said YES. I am actually letting people help me, which is probably what I should do more of...I am realizing. This may mean that I will get to bed before 2am and will be fresh and ready to go when Ally calls me into her room at 3am. And 4am. Hah.
Right now, we are just trying to hold on until Monday for a blood test and see where we are for that transfusion. And by the very grace of God, Ally does not get chemo again until the 28th. It just happened to be how the protocol was set up. And it is the only week skipped on purpose through this whole thing (all others were delays because her counts were too low). What a very special gift we got in that schedule. A greater power is working. Keep working....keep working... on saving my girl and bringing back that little girl I once knew who knows how to ride her bike and PLAY.
Monday, December 14, 2009
Chemo Day
As expected, little Miss Ally is on her way back downward a bit. We have had several good weeks, even though she has been getting chemo, and I knew our time was coming. She is still holding her own, but the side effects of the chemo are setting in. Her ANC is at 230 (low) which means we will no longer be able to take her out, take her to basketball games or church or whatever we have been doing. We will have to rely on our friends and family to entertain us through the holidays, which isn't all that bad. Dr B still felt she should try to go to school this week...only four days left and then she is off for 16/17 days. She failed to go today because of some painful back pain. We have not experienced this yet. She woke up just screaming/crying in pain four times last night. It is almost like a pinched nerve and it is right at the site of her spinal taps. The Dr thinks it could be caused by the Vincristin, which is famous for causing all kinds of joint pains. She is also walking a bit off these days (again, because of the Vincristin) and maybe that is causing some spasms in her back. We did make it to the clinic today for two more doses of chemo and they are expecting Ally will need another blood transfusion within the week. Thanks to all of you who donate blood...which reminds me that it is time I do the same.
We took some treats for our clinic nurses and paid a few visits to our in-patient friends. They seem to be having a string of some very bad luck up there....another patient is in ICU tonight and not expected to make it through the night. Please keep all the families in your thoughts, as always, but also the nurses. I know this is wearing on quite a few of them and I honestly don't know how they do the jobs they do. But thank God for them.
Although we were warned that her rough patch is coming up (the next two weeks could be hard), I am fully aware and fully grateful that I am not currently in the hospital. You have no idea how many times a day I say a prayer that we make it through the season without a fever/illness bringing us to the hospital. I can almost handle anything, as long as it is not that.
That being said, I am completely stressing out about the number of things I have to do before Christmas. And really, I have no ability to go anywhere unless she goes to school...which is iffy. And I have a lot of gifts left to buy. And it is not a good time of year to call in any favors from my friends either. And my husband and 2 well kids are leaving me here for the whole weekend while they travel to Jerad's hometown for a visit. So yes, I am still human, and I still stress a little about the small stuff. But then I tell myself....it will get done...and I can only do what I can do, etc.
We did enjoy a good weekend filled with Santa visits and a couple of xmas parties. We went to my Dad's house and put up a tree and some decorations for him. On Sunday we attended a very special Christmas party put on by the charity..A Kid Again...which is like a local special wish foundation for the sick kids. They had all kinds of games, crafts, entertainment...and then they gave each one of my kids about $50 worth of presents to take home. Not just Ally. But Evan and Carly too. It is so nice that they recognize that the illness effects the whole family, and our other two suffer quite a bit too. If you are looking for anywhere to make you charitable contributions, this is one charity that is quite worthy.
I will try to post some weekend pictures later. I am super busy with my part time accounting job and it is calling me back to work. Yes, at 11 pm at night. I will continue to burn the midnight oil.
Thanks for following our story. I continue to learn of or meet people that read this blog and I am always surprised by how many of you do. And you keep on following, never giving up on us. I am grateful for the support.
Ally's Army is marching on....closer to the finish line everyday.
We took some treats for our clinic nurses and paid a few visits to our in-patient friends. They seem to be having a string of some very bad luck up there....another patient is in ICU tonight and not expected to make it through the night. Please keep all the families in your thoughts, as always, but also the nurses. I know this is wearing on quite a few of them and I honestly don't know how they do the jobs they do. But thank God for them.
Although we were warned that her rough patch is coming up (the next two weeks could be hard), I am fully aware and fully grateful that I am not currently in the hospital. You have no idea how many times a day I say a prayer that we make it through the season without a fever/illness bringing us to the hospital. I can almost handle anything, as long as it is not that.
That being said, I am completely stressing out about the number of things I have to do before Christmas. And really, I have no ability to go anywhere unless she goes to school...which is iffy. And I have a lot of gifts left to buy. And it is not a good time of year to call in any favors from my friends either. And my husband and 2 well kids are leaving me here for the whole weekend while they travel to Jerad's hometown for a visit. So yes, I am still human, and I still stress a little about the small stuff. But then I tell myself....it will get done...and I can only do what I can do, etc.
We did enjoy a good weekend filled with Santa visits and a couple of xmas parties. We went to my Dad's house and put up a tree and some decorations for him. On Sunday we attended a very special Christmas party put on by the charity..A Kid Again...which is like a local special wish foundation for the sick kids. They had all kinds of games, crafts, entertainment...and then they gave each one of my kids about $50 worth of presents to take home. Not just Ally. But Evan and Carly too. It is so nice that they recognize that the illness effects the whole family, and our other two suffer quite a bit too. If you are looking for anywhere to make you charitable contributions, this is one charity that is quite worthy.
I will try to post some weekend pictures later. I am super busy with my part time accounting job and it is calling me back to work. Yes, at 11 pm at night. I will continue to burn the midnight oil.
Thanks for following our story. I continue to learn of or meet people that read this blog and I am always surprised by how many of you do. And you keep on following, never giving up on us. I am grateful for the support.
Ally's Army is marching on....closer to the finish line everyday.
Saturday, December 12, 2009
Thursday, December 10, 2009
Coming off the steriod
First I wanted to say a thank you to everyone for the comments this week. I really do read each and every one and often gain some sort of insight from them. I appreciate everyone who takes a little time to tell me what they think. It has just been a rough week, emotionally more than anything, and sometimes I just rely on all my friends and family to carry me through the rough patches.
Ally is doing well. She has gone to school three days this week (albeit late each day). I basically let her sleep until she wakes up around 745 or 8 and then she makes her own breakfast (almost always scrambled eggs...good protein!). And then Jerad or I take her. I think she is doing alright. She seems to have come out of that steriod-induced depression that she was in for about a week. It is nice to hear her giggle again. She is still not sleeping at all at night though. She is up much of the night...the steriod (decadron) just won't let her sleep either. I was in there from 3-6:30 last night and Jerad did the night before. We are tired parents to say the least. I am hoping this lets up again soon, but she goes right back onto steriods on Monday. UGH.
Tonight Jerad took her to a dinner event where the WSU Raider team was eating. We are friends with Coach Brownell. Jerad said she was just grinning from ear to ear because four of the players, at separate times, came up to talk to her and ask how she was doing, etc. And several even called her by name. Who knew that she would care about that, but I guess she was pretty tickled. She went to bed looking at her autographed poster of the boys that hangs in her room and identifying which ones knew her. Always has been a loyal Raider fan...since she was 6 months old. We always tell her she is a "rock star" because pretty much everybody knows who Ally Barnett is.
My Dad was just telling me about a friend of his grandson, Granite, who was in K and 1st grade with Ally. He says he is growing his hair out to donate the hair and give the money to Ally. Dad said he really likes Ally and wanted to do it for her. Another one, Emily Fields, who is in Ally's class, just had 10 inches or something crazy lopped off her hair for the same reason. In Ally's honor. And Mrs. H said she didn't even tell Ally....just the sweetest girl. Kids have such big hearts. I never realized that, but now I do.
Trying to keep up with the blog....but so much to do during this holiday season. Forgive me if I miss some days here or there. As long as all is good, I may take a couple of breaks.
Enjoy this holiday season with your family. The spirit of giving is just all around us.
Ally is doing well. She has gone to school three days this week (albeit late each day). I basically let her sleep until she wakes up around 745 or 8 and then she makes her own breakfast (almost always scrambled eggs...good protein!). And then Jerad or I take her. I think she is doing alright. She seems to have come out of that steriod-induced depression that she was in for about a week. It is nice to hear her giggle again. She is still not sleeping at all at night though. She is up much of the night...the steriod (decadron) just won't let her sleep either. I was in there from 3-6:30 last night and Jerad did the night before. We are tired parents to say the least. I am hoping this lets up again soon, but she goes right back onto steriods on Monday. UGH.
Tonight Jerad took her to a dinner event where the WSU Raider team was eating. We are friends with Coach Brownell. Jerad said she was just grinning from ear to ear because four of the players, at separate times, came up to talk to her and ask how she was doing, etc. And several even called her by name. Who knew that she would care about that, but I guess she was pretty tickled. She went to bed looking at her autographed poster of the boys that hangs in her room and identifying which ones knew her. Always has been a loyal Raider fan...since she was 6 months old. We always tell her she is a "rock star" because pretty much everybody knows who Ally Barnett is.
My Dad was just telling me about a friend of his grandson, Granite, who was in K and 1st grade with Ally. He says he is growing his hair out to donate the hair and give the money to Ally. Dad said he really likes Ally and wanted to do it for her. Another one, Emily Fields, who is in Ally's class, just had 10 inches or something crazy lopped off her hair for the same reason. In Ally's honor. And Mrs. H said she didn't even tell Ally....just the sweetest girl. Kids have such big hearts. I never realized that, but now I do.
Trying to keep up with the blog....but so much to do during this holiday season. Forgive me if I miss some days here or there. As long as all is good, I may take a couple of breaks.
Enjoy this holiday season with your family. The spirit of giving is just all around us.
Wednesday, December 9, 2009
Fear
It has been the weirdest weather day around here today. Sunny one moment, and then the sky was black as night, and then the ice pellets shot out of the sky. And then the cycle repeated. And repeated. And repeated. And the wind was so strong that it nearly picked our extremely large and non-green SUV up and tossed us like a matchbox car. Mother Nature was just not happy today. She could not decide what to do. But at one moment about 4 pm I looked towards the sky (as I often do) and there were those super long bright sunbeams pouring through the clouds...maybe 10 of them. They looked like giant slides in the sky with a free trip back down to earth. I couldn't help but think of Ashley.
We travelled north today...about 90 miles...to attend Ashley's visitation service. You have to know that this was one of the hardest things I have had to do. I have not been into a funeral home since I was the one standing up there...and talking to the whole line of people for Mom's service. I felt strong for about 60 seconds but then I saw all the pictures of our friends...a happy family of five. The force of leukemia ripped them apart. I saw Dr B. How many of these does he have to go to? I REALLY don't want to know the answer to that question. There was Shannon and Ana some of the same people that care for Ally. We truly are a family. And then I saw Ashley's little sister running through the room, happy, putting a stuffed animal up in her sisters coffin. She was laughing and she has always reminded me of Carly...we have always said that. She is too young to know the pain...and good for her. I was wishing that I could feel like her. Because I could barely compose myself, but I tried. Ashley's mom just held onto me held onto me and didn't let me go. She told me she was missing the hospital already. Because that is what we know.
Jerad and I have had a very rough couple of days. Lots of tears. Lots of worry. We never used to be like this. We are strong people, but even the strongest must fall down. When counts are low for these kids, anything can happen. So Jerad and I were talking about how we both just kind of put things out of our mind. It may sound callous, and really most people couldn't understand. But we HAVE to do this. We cannot worry about every little thing or we will be consumed. Instead of rarely sleeping, we would never sleep. Sometimes it is better to be a little ignorant.
Every parent has fears. I am scared a lot. But I hold my three children close to me as a much as I can. I am way more overlooking of trivial irritating things than I used to be. Little things just don't bother me anymore. But big things do. Every night I rock my little Carly girl for just a minute or two, and then I lay her down to go to bed. I usually have 1000 things to get to and it is late...you know the drill. But tonight, I rocked her and rocked her and daydreamed and prayed for a long time. And then I looked down and that little angel was asleep in my lap. A little peaceful gift for me.
Please pray this holiday season for all of those people who are living their fears and that they find some sort of peace to get them through.
We travelled north today...about 90 miles...to attend Ashley's visitation service. You have to know that this was one of the hardest things I have had to do. I have not been into a funeral home since I was the one standing up there...and talking to the whole line of people for Mom's service. I felt strong for about 60 seconds but then I saw all the pictures of our friends...a happy family of five. The force of leukemia ripped them apart. I saw Dr B. How many of these does he have to go to? I REALLY don't want to know the answer to that question. There was Shannon and Ana some of the same people that care for Ally. We truly are a family. And then I saw Ashley's little sister running through the room, happy, putting a stuffed animal up in her sisters coffin. She was laughing and she has always reminded me of Carly...we have always said that. She is too young to know the pain...and good for her. I was wishing that I could feel like her. Because I could barely compose myself, but I tried. Ashley's mom just held onto me held onto me and didn't let me go. She told me she was missing the hospital already. Because that is what we know.
Jerad and I have had a very rough couple of days. Lots of tears. Lots of worry. We never used to be like this. We are strong people, but even the strongest must fall down. When counts are low for these kids, anything can happen. So Jerad and I were talking about how we both just kind of put things out of our mind. It may sound callous, and really most people couldn't understand. But we HAVE to do this. We cannot worry about every little thing or we will be consumed. Instead of rarely sleeping, we would never sleep. Sometimes it is better to be a little ignorant.
Every parent has fears. I am scared a lot. But I hold my three children close to me as a much as I can. I am way more overlooking of trivial irritating things than I used to be. Little things just don't bother me anymore. But big things do. Every night I rock my little Carly girl for just a minute or two, and then I lay her down to go to bed. I usually have 1000 things to get to and it is late...you know the drill. But tonight, I rocked her and rocked her and daydreamed and prayed for a long time. And then I looked down and that little angel was asleep in my lap. A little peaceful gift for me.
Please pray this holiday season for all of those people who are living their fears and that they find some sort of peace to get them through.
Tuesday, December 8, 2009
What we have been doing
We have been a little busy lately doing our normal Christmas projects.
Overall, Ally is still doing fairly well. She has finished up the dreaded steriod week. She also got two more doses of chemo on Monday when we visited the clinic. No crying at all with the port accessing...she is just a trooper now. Everyone there is so nice to her that I almost think she likes going. (just not the after effects of the drugs) She has been complaining of headaches still...hopefully this is caused by the steriods and will go away. She is not sleeping very well at night because of them....they make her sleep really lightly. She has also just been very down lately, subdued and almost sad. But then when I ask her if she is sad about anything, she just says no. I think this is the way the steriods are treating her. Some kids have tantrums and fits, but I think Ally handles steriods by just becoming even more quiet and subdued. I am hoping anyway....and this is all before I told her about Ashley.
I didn't tell her until Tuesday night, because I just didn't feel like her mood was very good. But then I had to explain to her where I was going tomorrow (Ashley's service) so I had to tell her. Ally is the type of child who just bottles everything up inside. Whereas Evan is constantly talking about Mom, etc, ...well Ally never says a word unless I ask her. And honestly, I would much rather her talk and/or show emotion. So as soon as we mentioned that Ashley had passed away, she just sat quietly and had a sad look on her face. Heartbreaking to tell her and see her little face react. We continued on by telling her that she does NOT have that kind of leukemia and that she is doing really well and this is NOT going to happen to her, etc. Evan had prayed for Ashley every single night, so we told him too. We talked about Ma being up in heaven and that she would definitely be taking care of Ashley and showing her all kinds of cool stuff. And Evan says: well now I know three people in heaven..Ma, Ashley, and Coachie (the neighbors dog). And he sometimes says Michael Jackson too. And Jesus. Man that kid is smart sometimes. Seriously, what 5 year old says Jesus?
And once again I am angry and sad that my kids are having to learn all these life lessons WAY TOO EARLY for my liking. I go back to wishing that all my kids had to worry about were bad dreams or mean kids or whatever else kids worry about. We have bigger things to cause our worry around here.
I did want to mention one thing that Ally did this weekend that made me just weep with pride. The hospital had invited her to attend a party at Build a Bear for some of the sick kids. She was allowed to make a bear for herself and also one for a friend. Build a Bear has always been one of Ally's favorite things to do, so she was happy to go (well, in her subdued way). When we got there, she decided that she was going to make one for a fellow leukemia friend we have made online who lives in NJ. And then she says she doesn't even want to make one for herself, but rather use the other one for her 10 year old friend Davey who is currently in the hospital battling AML. I never even brought up this option to her...it was all her idea...and I was so proud of her for making that decision that I was just crying through most of the event. I could barely muster up enough words to properly thank the man who owned the franchise and was doing this for the kids. I obviously try to teach her that it is better to give than receive....but when she did it all on her own I felt so blessed. And proud. And on Monday when we gave Dave the camoflauged bear that she made him, the look on his face was priceless. He really seemed touched.
Tomorrow is going to be a very hard day. We are driving about an hour north of here to go to Ashley's visitation. I am not sure if I will make it out of there on my own two feet....it is unbearable, unthinkable, there are no words to describe it. But I must go and pay my respects to our fellow hospital family. I pray this is the first and last time that I have to do this.
Please keep all of our kids in your prayers: Ally, Dave, Amanda, Braden, Skye, Jackie, Alivia, Maggie, Lincoln, Bonnie, Owen, Katie, and Tori...just to name a few.
We made candy on Friday
Christmas Cookies today
They did cookies for almost two hours!
Ally made me some homemade artwork for my mantle display...love it.
Ally always shows Carly how to do things. She is SUCH a good sister.
We made a foam candy cane village and a gingerbread house over the weekend.
That can wear a mother flat out.....
But I loved Ally's creative roof...all her idea.
We have also made our Christmas cookies, done a little shopping, and ordered our Christmas cards. Trust me though, I am still way behind on most of it. And I have the fear inside me that "what if" something goes wrong and we land back in the hospital and I lose precious time. I am trying not to think about that option.
Christmas Cookies today
They did cookies for almost two hours! 
Ally made me some homemade artwork for my mantle display...love it.
Ally always shows Carly how to do things. She is SUCH a good sister.
We made a foam candy cane village and a gingerbread house over the weekend.That can wear a mother flat out.....
But I loved Ally's creative roof...all her idea.
We have also made our Christmas cookies, done a little shopping, and ordered our Christmas cards. Trust me though, I am still way behind on most of it. And I have the fear inside me that "what if" something goes wrong and we land back in the hospital and I lose precious time. I am trying not to think about that option. Overall, Ally is still doing fairly well. She has finished up the dreaded steriod week. She also got two more doses of chemo on Monday when we visited the clinic. No crying at all with the port accessing...she is just a trooper now. Everyone there is so nice to her that I almost think she likes going. (just not the after effects of the drugs) She has been complaining of headaches still...hopefully this is caused by the steriods and will go away. She is not sleeping very well at night because of them....they make her sleep really lightly. She has also just been very down lately, subdued and almost sad. But then when I ask her if she is sad about anything, she just says no. I think this is the way the steriods are treating her. Some kids have tantrums and fits, but I think Ally handles steriods by just becoming even more quiet and subdued. I am hoping anyway....and this is all before I told her about Ashley.
I didn't tell her until Tuesday night, because I just didn't feel like her mood was very good. But then I had to explain to her where I was going tomorrow (Ashley's service) so I had to tell her. Ally is the type of child who just bottles everything up inside. Whereas Evan is constantly talking about Mom, etc, ...well Ally never says a word unless I ask her. And honestly, I would much rather her talk and/or show emotion. So as soon as we mentioned that Ashley had passed away, she just sat quietly and had a sad look on her face. Heartbreaking to tell her and see her little face react. We continued on by telling her that she does NOT have that kind of leukemia and that she is doing really well and this is NOT going to happen to her, etc. Evan had prayed for Ashley every single night, so we told him too. We talked about Ma being up in heaven and that she would definitely be taking care of Ashley and showing her all kinds of cool stuff. And Evan says: well now I know three people in heaven..Ma, Ashley, and Coachie (the neighbors dog). And he sometimes says Michael Jackson too. And Jesus. Man that kid is smart sometimes. Seriously, what 5 year old says Jesus?
And once again I am angry and sad that my kids are having to learn all these life lessons WAY TOO EARLY for my liking. I go back to wishing that all my kids had to worry about were bad dreams or mean kids or whatever else kids worry about. We have bigger things to cause our worry around here.
I did want to mention one thing that Ally did this weekend that made me just weep with pride. The hospital had invited her to attend a party at Build a Bear for some of the sick kids. She was allowed to make a bear for herself and also one for a friend. Build a Bear has always been one of Ally's favorite things to do, so she was happy to go (well, in her subdued way). When we got there, she decided that she was going to make one for a fellow leukemia friend we have made online who lives in NJ. And then she says she doesn't even want to make one for herself, but rather use the other one for her 10 year old friend Davey who is currently in the hospital battling AML. I never even brought up this option to her...it was all her idea...and I was so proud of her for making that decision that I was just crying through most of the event. I could barely muster up enough words to properly thank the man who owned the franchise and was doing this for the kids. I obviously try to teach her that it is better to give than receive....but when she did it all on her own I felt so blessed. And proud. And on Monday when we gave Dave the camoflauged bear that she made him, the look on his face was priceless. He really seemed touched.
Tomorrow is going to be a very hard day. We are driving about an hour north of here to go to Ashley's visitation. I am not sure if I will make it out of there on my own two feet....it is unbearable, unthinkable, there are no words to describe it. But I must go and pay my respects to our fellow hospital family. I pray this is the first and last time that I have to do this.
Please keep all of our kids in your prayers: Ally, Dave, Amanda, Braden, Skye, Jackie, Alivia, Maggie, Lincoln, Bonnie, Owen, Katie, and Tori...just to name a few.
Sunday, December 6, 2009
Ashley Bohman, Rest in Peace
It is usually about this time on Sunday night that I sit down to recap our weekend. I was just this morning feeling so grateful that we were home this weekend and not in the hospital. Tonight, I cannot recap our events because I am sitting here in utter sadness. We lost one of our hospital family this morning. Ally's little five year old friend Ashley lost her battle early this morning. We have known this wonderful family since September when they came back into the hospital with Ashley...her AML had relapsed. Ashley was one of those beautiful full of life girls that would go skipping down the hall every chance that she got to go outside. I helped her and her sister Kenzi build a foam house in the lounge on one of the first days that I met them and she was full of spirit. On Ally's last day spent in the hospital, a warm November day, Ally and Ashley were swinging side-by-side at the hospital playground. I sat with Ashley's Dad on a park bench, and we mulled about all the unfairness in life and how hard it is to have a child with cancer. The worry and sadness was evident in his eyes, and I am sure he would say the same about me. I remember feeling guilty when we got to go home, and they had to stay. And that is the last that I have seen them.
You may remember that Ashley was a patron in Ally's nail salon a few weeks back. Here is the link back. http://all4ally.blogspot.com/2009/11/quick-post.html She squealed in delight over the color of her nail polish and soon after her sister and Mom were also at the salon.
I truly do not know what to say or how to feel in times like this. My heart is aching for Mike and Shelly and for her little sister Kenzi and their new baby Hailey. This is a strong reminder that life can be so fleeting and we have to hold onto it while it lasts. I am sitting here looking at a little coloring page that Ashley made us as a thank you when we let her borrow our Wii. It has been hanging on our refrigerator for a month and I just took it down a few days ago. Now it is my treasure.
I have not had the courage to tell Ally yet. I am not sure how to go about this. One more thing I will have to figure out, but not today. We are back to the hospital in the morning for treatment and I am hoping that she doesn't hear about it. I will find a way to tell her soon.
Please pray for strength for the Bohman family...that they may somehow find peace in the hard times ahead. I do know that Ashley is no longer suffering from any more treatments and most importantly she no longer has the cancer ruling her life. She is free of all the suffering and resting in peace. We love you little girl.
You may remember that Ashley was a patron in Ally's nail salon a few weeks back. Here is the link back. http://all4ally.blogspot.com/2009/11/quick-post.html She squealed in delight over the color of her nail polish and soon after her sister and Mom were also at the salon.
I truly do not know what to say or how to feel in times like this. My heart is aching for Mike and Shelly and for her little sister Kenzi and their new baby Hailey. This is a strong reminder that life can be so fleeting and we have to hold onto it while it lasts. I am sitting here looking at a little coloring page that Ashley made us as a thank you when we let her borrow our Wii. It has been hanging on our refrigerator for a month and I just took it down a few days ago. Now it is my treasure.
I have not had the courage to tell Ally yet. I am not sure how to go about this. One more thing I will have to figure out, but not today. We are back to the hospital in the morning for treatment and I am hoping that she doesn't hear about it. I will find a way to tell her soon.
Please pray for strength for the Bohman family...that they may somehow find peace in the hard times ahead. I do know that Ashley is no longer suffering from any more treatments and most importantly she no longer has the cancer ruling her life. She is free of all the suffering and resting in peace. We love you little girl.
Friday, December 4, 2009
PEG shot Friday
Gonna do a quick post here...since I missed last night and tonight is Friday night and I am exhausted. Last night I missed because Jerad and I went to a late night basketball game. We put the kids in bed, had a sitter come, and went to the Raiders game which was also on ESPNU. It was fun, but it was late! I was glad we had the opportunity to have some down time together. Always important when you are faced with our situation.
Ally did go to school both Thursday and Friday. I took her once she woke up, but not all that late (at school by 845 or 9.) I did have to pull her out this afternoon as she had to go get those horrible legs shots. She really did well. I asked her if she was nervous and our cool little cucumber just peeped out a No. She didn't even start crying preemptively when they walked in the room with the shot. Normally she would have gotten anxious. She just keeps learning more and more and is growing up too fast. Jerad held one side of her and I held the other. Nurse Sharon got her right leg and Nurse Amy got her left...after a 1-2-3 count which she always requests. She started to scream just a little, but then came around and no tears were shed. I seriously think I would have cried...these needles are just huge. She is having a little trouble walking and they were definitely hurting her tonight. She wanted to have our friends over for pizza, and we did, but she still didn't seem quite herself. Hopefully they don't make her feel horrible this weekend.
We thought she might need blood, she has had some steady headaches. So she had to fill this pretty big vial of blood with drops from her finger stick for a test and a cross-match. More than a little blood....again she did it in stride. Turns out she didn't need blood, which is good, and they attributed the headaches to the steriods she has been taking.
Her ANC was 5000. An extra zero on there. It worries me a little, because we never see it that high, but they always say not to worry...it will go down. I guess that means she can do about anything this weekend. It usually does its drop after 7 days, which would be Monday. And she does get more chemo again on Monday too.
Please pray that Ally's legs heal up and she will be pain free soon. Please pray the chemo side effects are minimal and she can continue to enjoy this holiday season. Most importantly, we pray that her cancer is gone and never returns.
Ally did go to school both Thursday and Friday. I took her once she woke up, but not all that late (at school by 845 or 9.) I did have to pull her out this afternoon as she had to go get those horrible legs shots. She really did well. I asked her if she was nervous and our cool little cucumber just peeped out a No. She didn't even start crying preemptively when they walked in the room with the shot. Normally she would have gotten anxious. She just keeps learning more and more and is growing up too fast. Jerad held one side of her and I held the other. Nurse Sharon got her right leg and Nurse Amy got her left...after a 1-2-3 count which she always requests. She started to scream just a little, but then came around and no tears were shed. I seriously think I would have cried...these needles are just huge. She is having a little trouble walking and they were definitely hurting her tonight. She wanted to have our friends over for pizza, and we did, but she still didn't seem quite herself. Hopefully they don't make her feel horrible this weekend.
We thought she might need blood, she has had some steady headaches. So she had to fill this pretty big vial of blood with drops from her finger stick for a test and a cross-match. More than a little blood....again she did it in stride. Turns out she didn't need blood, which is good, and they attributed the headaches to the steriods she has been taking.
Her ANC was 5000. An extra zero on there. It worries me a little, because we never see it that high, but they always say not to worry...it will go down. I guess that means she can do about anything this weekend. It usually does its drop after 7 days, which would be Monday. And she does get more chemo again on Monday too.
Please pray that Ally's legs heal up and she will be pain free soon. Please pray the chemo side effects are minimal and she can continue to enjoy this holiday season. Most importantly, we pray that her cancer is gone and never returns.
Wednesday, December 2, 2009
December 2
Not too much to report here today....I know you guys will appreciate an abbreviated post after my last two novels. Hah! Ally did make it to school...all day. She also come home and went straight to her religion class at St Luke. It was a busy day. Tonight she was complaining of a headache and also so cold and could not get warm. This usually means one thing: She needs blood. So I am guessing that is in our cards...hopefully we can make it to our scheduled appointment on Friday. That is when she gets the lovely PEG shots that really will make her feel horrible. Just in time for a very busy Saturday where we have three Christmas events to go to. We will just do our best. She is definitely starting to slide downward a little and we are back off our honeymoon.
It is still to be determined as to whether she will feel well enough to go tomorrow. Maybe just part of the day? I can tell you one thing...I hate waking her up in the morning when it is still dark and knowing that she just had chemotherapy. It makes me feel horrible. The girl needs sleep. Tardy is still better than not going at all.
One small little note: Today is my Grandma Josie's 90th birthday!!!!! (my mom's mom) I just got off the phone with her (she lives back in PA) and she is a remarkable lady. I so wish I could have been with her today...and I would have if my daughter was not in this condition. And my Grandpa is 92! And they live in the same house they always did. I aspire to have this life and hope my genes are good like theirs.
The picture of today is our tree...lights, then ribbon, then ornaments. (70% of which were given to me by my Mom resulting in hours of tears by me while putting the tree up...but it is up) I keep telling Jerad it is leaning a little too. Darnit! Gotta go get on that now.....
Thanks for the prayers and all your support.
It is still to be determined as to whether she will feel well enough to go tomorrow. Maybe just part of the day? I can tell you one thing...I hate waking her up in the morning when it is still dark and knowing that she just had chemotherapy. It makes me feel horrible. The girl needs sleep. Tardy is still better than not going at all.
One small little note: Today is my Grandma Josie's 90th birthday!!!!! (my mom's mom) I just got off the phone with her (she lives back in PA) and she is a remarkable lady. I so wish I could have been with her today...and I would have if my daughter was not in this condition. And my Grandpa is 92! And they live in the same house they always did. I aspire to have this life and hope my genes are good like theirs.
The picture of today is our tree...lights, then ribbon, then ornaments. (70% of which were given to me by my Mom resulting in hours of tears by me while putting the tree up...but it is up) I keep telling Jerad it is leaning a little too. Darnit! Gotta go get on that now.....
Thanks for the prayers and all your support.
Tuesday, December 1, 2009
Big News Day
I have several pieces of big news to report on today. First and foremost, Ally did make it to school. I was so pleased that she went and I never heard a single complaint! I knew I was in good shape when I was driving her (and her sister) to school...we were listening to Christmas songs on the radio and she was just humming away in the back seat. Cute. When she got to school, her guidance counselor, Mrs Kulwicki, was standing at the front door holding it open with the biggest smile on her face. Then two steps in...her art teacher gives her a huge hug. Then our kind school secretaries made her feel welcome. She could not stop smiling. Off to her classroom. As soon as she walked through the doorway, tons of kids were running from their desks to get right up on her and see her. Mrs Hamilton, her teacher, said she had told them Ally was coming, but was gonna be a little late and they were on edge waiting all morning. Midway through the day I got a note that Ally was doing great and I breathed in a big sigh of relief. It may not last, we will see, but she did one day. And one day is better than none.
I was surprised when she got off the bus and asked to play Wii. She is not much of a video gamer type. She wanted to do Dance Dance Revolution. Apparently, they did it in PE class but she felt too uncomfortable to try it there. Afraid she might fall. So we set it up here and she did it for about an hour and a half! I think she may be participating at school next time. Today was a TV free day as a result. She even did her reading before bed. This is big stuff in our household.
She is all set to go to school tomorrow...at normal time. She has already ordered me to make her a tuna sandwich for her lunch. Hoping nothing changes in the night.
Her biggest news of the day, in her opinion, was that she finally FINALLY swallowed a pill. Her steroids are two little pills that she has to take twice a day. (four pills) We are not allowed to crush them...it makes the taste almost unbearable that way, so we cut them into teeny tiny bits. Well today she decided she could swallow them if we cut them in half and served it up with a bit of chocolate chip mint ice cream liquified with a little milk. And she did it!!! Right afterward, she said "Dad, how old is Amanda?" (this is her fellow ALL patient friend from the hospital)...so Jerad said "she is 15" And Ally says "I am only 8!!! And I took the pill!" She was super proud of herself. (Sorry Amanda, I know you will read this, but Ally is willing to teach you!) She should be proud...I know I could not swallow a pill when I was eight.
So while the girls were at school, I promised Evan I would take him to get a Christmas tree for his room. The girls both have normal size trees and he had this pathetic thing that looked ridiculous especially considering he IS after all the decorating boy. (e.g. Halloween) Check it out:
We searched around but could not find a tree that suited me. They were all too big or too small or in ornate looking pots or something weird. So finally, we are at Lowe's and I went to the outdoor area and found a perfect size real LIVE Christmas tree and it was cheap! I wanted a live Christmas tree this year...we always had one growing up...but Jerad will not really allow it. So now, we have a live tree...and we got cute perfect Charlie Brown style lights....colored, as the kids always want but I won't allow on the big tree. And he is hanging all his ornaments that he is making/painting on it too.
On the way home from Lowe's we had an interesting conversation that I must remember...so I am writing it here. Again, for my own benefit, but cute.
Evan: What do you think Ma is doing in Heaven right now? (we discuss this all the time)
Me: Probably golfing. Or maybe having lunch with her friends.
Me: Actually, I bet she is putting up her Christmas Tree right now
Evan: Well I think she is playing with the birds.
Me: Oh, Ma loved the birds.
Evan: Yea, the bluebird right?
Me: Right.
Evan: I think she is holding the bird right on her finger. (something that would terrify him)
Me: Yea, they probably land on you in Heaven and you are not even scared.
A minute or two passes.
Evan: Mom, do birds poop in Heaven?
Me: laughing really hard.....probably not. Well, at least not on Ma.
Here is our little tree. And it is currently making me happy. And him too. And also, I have been doing this thing for years where I take a picture everyday in December and put them in a little book. Decorations, baking, presents, Santa, lights, whatever. So you are probably gonna see a lot of those type pictures out here. If I can keep it up. Today being December 1 and all....I have one day down, anyway.
I was surprised when she got off the bus and asked to play Wii. She is not much of a video gamer type. She wanted to do Dance Dance Revolution. Apparently, they did it in PE class but she felt too uncomfortable to try it there. Afraid she might fall. So we set it up here and she did it for about an hour and a half! I think she may be participating at school next time. Today was a TV free day as a result. She even did her reading before bed. This is big stuff in our household.
She is all set to go to school tomorrow...at normal time. She has already ordered me to make her a tuna sandwich for her lunch. Hoping nothing changes in the night.
Her biggest news of the day, in her opinion, was that she finally FINALLY swallowed a pill. Her steroids are two little pills that she has to take twice a day. (four pills) We are not allowed to crush them...it makes the taste almost unbearable that way, so we cut them into teeny tiny bits. Well today she decided she could swallow them if we cut them in half and served it up with a bit of chocolate chip mint ice cream liquified with a little milk. And she did it!!! Right afterward, she said "Dad, how old is Amanda?" (this is her fellow ALL patient friend from the hospital)...so Jerad said "she is 15" And Ally says "I am only 8!!! And I took the pill!" She was super proud of herself. (Sorry Amanda, I know you will read this, but Ally is willing to teach you!) She should be proud...I know I could not swallow a pill when I was eight.
So while the girls were at school, I promised Evan I would take him to get a Christmas tree for his room. The girls both have normal size trees and he had this pathetic thing that looked ridiculous especially considering he IS after all the decorating boy. (e.g. Halloween) Check it out:
We searched around but could not find a tree that suited me. They were all too big or too small or in ornate looking pots or something weird. So finally, we are at Lowe's and I went to the outdoor area and found a perfect size real LIVE Christmas tree and it was cheap! I wanted a live Christmas tree this year...we always had one growing up...but Jerad will not really allow it. So now, we have a live tree...and we got cute perfect Charlie Brown style lights....colored, as the kids always want but I won't allow on the big tree. And he is hanging all his ornaments that he is making/painting on it too.
On the way home from Lowe's we had an interesting conversation that I must remember...so I am writing it here. Again, for my own benefit, but cute. Evan: What do you think Ma is doing in Heaven right now? (we discuss this all the time)
Me: Probably golfing. Or maybe having lunch with her friends.
Me: Actually, I bet she is putting up her Christmas Tree right now
Evan: Well I think she is playing with the birds.
Me: Oh, Ma loved the birds.
Evan: Yea, the bluebird right?
Me: Right.
Evan: I think she is holding the bird right on her finger. (something that would terrify him)
Me: Yea, they probably land on you in Heaven and you are not even scared.
A minute or two passes.
Evan: Mom, do birds poop in Heaven?
Me: laughing really hard.....probably not. Well, at least not on Ma.
Here is our little tree. And it is currently making me happy. And him too. And also, I have been doing this thing for years where I take a picture everyday in December and put them in a little book. Decorations, baking, presents, Santa, lights, whatever. So you are probably gonna see a lot of those type pictures out here. If I can keep it up. Today being December 1 and all....I have one day down, anyway.
Monday, November 30, 2009
It is done.
And so it is done. The chemo is back in her little body doing its job. She is starting a new phase today called Delayed Intensification I. It mimics what they did in month 1 and month 2 of her treatment. I love every time we start a new phase. It's a clean slate. Kinda like college, you start a new course, you are that much closer to being done. Except you really didn't want to be done with college, but anyway you get the idea.
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!)
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
Thanksgiving Weekend
Well our Thanksgiving Break is over. And I do mean break. Ally had a nice break from all the chemotherapy and hospital stays and we got the chance to see our "real" daughter again. She creeps out every few months here. She gets happy, exuberantly happy, and we just sit and relish in the sound of her giggling. We did all sorts of things that you would expect a normal family to do.- 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!
Making cookies with Pa
Hot Tub on a cold day
This is me...trimming some juniper greens and red twigs, and berries and such to make a pot for my front porch. My mom always collected stuff from her land to make me a Christmas arrangement. Every year. It was tradition. So this year, I braved the sprinkling rain and collected it for myself. In her honor, as always.
Our mega-huge table....
Ally and cousin Aly showing Great Grandma their knitting technique
One of the most special things that we did was to help dedicate our new church building. My Dad has been largely responsible for the construction and financing of this lovely new church...Grace Crossing is located at 1553 Beaver Valley Rd. The installers from Booher Carpet are starting to lay the floor tomorrow. So today, we took the opportunity to write some verses, prayers, remembrances on the floor of the church. Sort of a time capsule, if you will, that might get looked at again when they change floor covering. Very cool idea if you ask me. I was happy that our girl was there to represent Ally's Army and put a few things down on the floor for herself. You know all of the stars had to be perfectly aligned for her to participate in this event. Pastor Gil called her out in front of the whole congregation. She wouldn't stand up, but so many people are praying for her there, and most don't even know her. I helped the kids to come up with some verses that I thought were applicable...here is what we did:Here we are...writing our prayers
This is what Ally wrote....very applicable for her. It is also in honor of our friend Bill Beecheler who is currently battling a brain tumor. This is the verse on the sidebar of his blog. (written by one of my very best friends, Lisa Bauer)
Ally wrote this one for her Dad....always thinking like a builder
This is Evan's. Hard to read but it says "Be still and know that I am God"
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.
This is what Bella wrote...
So if you are at all interested, the first public service is being held on Dec 13th at 11am. It will be a special time. All are welcome and encouraged. Especially all of you Hunter's Ridge and Hunter's Pointe people right across the road.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
Thankful
The Barnett family is gearing up for a Thanksgiving with about 20 of our family members. My sister's family, my Dad, my grandma, my Aunt and Uncle, 2 cousins (with family) and even a cousin of a cousin. We are going to have a dinner in the club located in the ground floor of Jerad's office building, each of us bringing a dish or two. Jerad's family lives too far away for Ally to travel..maybe by next year she will be well enough to head that direction. Ally is really feeling great and I have heard her laugh more today than I have in the last three months combined.
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.
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.
Subscribe to:
Posts (Atom)
Posts
