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Week 19
MEAL DELIVERY--- If you are interested in bringing a meal for the Scott Family either for lunch or dinner, please e-mail Frances at NanaFrances1@yahoo.com. We thank every person who has brought us a meal thus far.
***UPDATED INFORMATION FOR DONATIONS*** Light the Night National Team Coordinator--Lois Whittaker Contact Lois if you have any questions lbish2@hotmail.com
Fundraisers for Allie--
http://www.browgriffiths.com/Allies_Magnets.html
Sunday, Sept. 12th--Day Fifty-Seven
4:00pm--You will have to excuse if this post is slightly incoherent--we've had a bad morning and a not so good day today. She looks better, less swollen, heartrate down, no fever, but very agitated. She has been screaming and crying every two or three minutes since 6am. She doesn't open her eyes, just cries. We've given her boluses (extra amounts of both fentanyl and versed), upped her continuous drip of fentanyl, and given her atavin. Nothing is working!! She needs some relief.
So many things to talk about....
Yesterday was a different day. She was awake from 9-noon entertaining all of us with her conversations with her ring mouse (who has been named Jerry--as in the cartoon, but also because Jerry is my dad). She made raspberries and never cried--like I said, a very different day from today! In the afternoon, she got a red cell transfusion and woke up to play with Jim. In total, she was awake five hours. Our moods and spirits were lifted. We felt joy being in the room (whereas we are all feeling a little wiped out right now--or maybe that's just me).
The candlelight vigil was breathtaking. To be honest, I was extremely hesitant about this at first. The attention made me squirm a bit. As I watched cars being directed by a security guard into the parking lot, I got even more jittery. Can't explain it. I didn't want to come out. Then, all the candles were lit. We stood in the pantry with Dennis and Dana and shined our flashlight down at the crowd. Dana and Dennis went to join the crowd, but not before encouraging me to join them. I was still hesitant. I called Dana on her cell phone for a crowd assessment. She told me how wonderful it was and urged me to come down. We saw the camera crew leave (didn't think I could handle an interview), so I decided that yes, I did want to be down there.
As apprehensive I was about having it, I'm ten times more appreciative that it happened. From the 12th floor, the sight of those candles was one of the most beautiful sights I've ever seen. It made me realize just how many people are thinking of my family. As we came off the elevator, Andrew and I grabbed hands, uniting us to meet the crowd. We walked out of the building and could hear a low rumble of voices singing Kumbaya. We grabbed each other tighter and headed towards the crowd. So many people there in support and love for our girl. So many people who just want to love on her too. How lucky I am to be able to love on her whenever I want right now. I'm scared of the time when our loving times will end.
When we arrived, one of the girls coordinating the event asked me if I was comfortable with a prayer. Of course. I looked near me to see my friend Sinde Wickersham close by. Perfect person to talk loudly! She said a sweet prayer for Allie and our family, and then everyone blew out their candles.
I don't know why for sure, but I felt the need to say something. I stood up, with Dana by my side because Andrew preferred to stay on the sidelines (no surprise to me there), and spoke. My ADD was kicking in and I couldn't focus on words to say. I was too busy scanning the crowd for faces. I think I garbled something out. I saw many people I had never seen before, but even more that I knew well. There was such a sense of warmth and community outpouring from everyone. We had co-workers from my school, other Plano ISD employees, co-workers of Andrew's, Frances' and my mom's work, family, close friends, neighbors. Several of Dana and Dennis' friends and family came. And we had students! My kids. One of the first faces I saw was Michelle Conway, a now 11th grader (yikes!) with big crocodile tears looking at me. As I spoke, I asked for my students to raise their hands. Then a voice yells out, "We love you, Mrs. Scott!" Oh yeah, I could pick that voice out of any crowd--AJ Sartor. There must have been more than thirty of my former students. If not more.
My years of experience with Spring Open House prepared me to handle the swarm. We told people thank you for coming, and then the crowd closed in--on me!! My students came first. Big hugs and tears. Those kids have been one of the biggest driving forces in my life for the past four years. The kids there represented each of those years. How proud I was to be standing there with them.
As we headed in, we stopped the security men to thank them for their extra effort. What a help they were, very appreciated. We hit the elevators, and Andrew said, "Sorry I wouldn't join you when you were speaking." I teased him about ditching me and he said, "well, that's how we work as a team--you know, you're the mouth!" Gee, thanks. Insinuating, of course, that he is the brain. Actually, its a fairly accurate assessment.
Thank you to all who attended the vigil, and to those that light there own candles in their home last night. I am honored that you are here with us on this journey.
Being Sept. 11th, we naturally thought the lead story on last night's news would be about the events three years ago. Andrew said he was going to grab some pizza from the family room before the broadcast started. He no sooner stepped out of the room when we heard Allie's name on the TV. "ANDREW!!!!" We all yelled for him to get back. Ms. St. James did a very touching and respectful piece. Such a tribute to Allie and her life. Seeing my words on the TV and hearing them read aloud was a surprise to me. Half the time, once I've written, I simply post. Rarely do I proofread, so I don't know how many millions of errors there are.
Sammy is back up here with the family. We have hated having him here in the hospital and not with us. Having Dana up here to visit with us is definitely a big bonus too! Though we've spoken several times a day, I miss her presence. Sam is improving each day, but still needs to manage his pain. We visited with him last night before the vigil, but he didn't want to acknowledge us until he was leaving. Hopefully, they will be able to go home soon. He needs to be able to take his medicine orally and get off fentanyl in order to go home.
Fieldon is experiencing some problems after having a belly port inserted on Friday. This is the last major hurdle, we hope, for them before they get to go home. We sincerely hope it is not any type of infection. New pictures of Fieldon are up on their website. That child is way too precious! And Emmaday--simply gorgeous in her matching pink outfits! We love to play with her. She especially loves my mom. Kids usually do.
Ted Wren's memorial service is tomorrow afternoon. Though I doubt I will be able to join them, my heart will be there with May, Marilyn, Joel, Haley, and all the rest of Ted's great family. I was honored that with all they are going through with their family, both May and Marilyn came to the vigil last night, as did Ted's friend Elaine. As I've said before, the community and family feel of this floor doesn't leave you.
Allie is fussing. I thought if I let her be, she would calm, but that doesn't seem to be happening. I had intended to post pictures along with today's post. I will leave those for tomorrow.
With love, Jenny, Andrew, and Allie
Saturday, Sept. 11th--Day Fifty-Six
10:25pm--I want to post a longer, more detailed post, but I am waiting for the news broadcast. It should be airing after the football game tonight on Channel 8. I will write either later tonight or tomorrow morning.
--Jenny
10:30pm--I've had two glasses of champagne; now I'm ready to post. Champagne, you ask? What could I possibly have to celebrate? My child's life, of course!
Last night, I asked you all to helped me celebrate Allie's life. This morning, I went on to the MSN board and noticed a post about how families were going to celebrate Allie today by doing something fun. What a beautiful and moving idea. I decided then and there that I would follow my own advice. I called Frances' best friend, Mary Albritton, who I've spoken about before. Mary was given the assignment to get a cake and champagne--we were having a party tonight. And we did just that. We ate a fabulous cake with pink icing and a beautiful inscription, and we toasted to Allie. I can't tell you how that lifted my spirits. We watched a slide show of Allie's pictures and saw a video of Allie and me chatting away during a sponge bath in June.
Allie looks a little worse today. She is extremely swollen. Her fever has not broken, even with toradol. Her heartrate remains over 170. Normal for Allie is around 130. She didn't wake up. She hasn't peed at all since
Ted Wren lived through the night, but not the morning. May came in to the waiting room and told Frances and me that he was gone. I cried with May, telling her I was so sorry. She told me that Ted is up in Heaven now, awaiting the arrival of my baby. I ache for this family. Especially for Ted's two children. I remember losing my father four years ago. I was only 22. Fresh out of college, and newly married.
We received a FedEx the other day with two pieces of paper. One was an explanation stating, "When Lance Armstrong was visiting your site...." The second paper was a note telling our family to "livestrong" signed by Lance Armstrong. To have someone like Lance Armstrong send us a note was truly uplifting. He is an inspiration. What he is doing for cancer research and awareness is astounding.
Speaking of cancer awareness, did you know that Sept is childhood cancer awareness month? Seems to me that I am doing just that. I wish I wasn't making you aware of childhood cancer through my own child, but such is my life. Several things are happening to make you aware of:
*Tomorrow night, Sat, is a candlelight vigil in the hospital parking lot. 8:30 pm. Candles provided. This was something that was meant to be a surprise to me and Andrew. Can I help it if a certain relative of mine (the one who gave birth to me) talks too loud on her cell phone?
* www.poshtots.com is donating part of their proceeds on any giraffe product bought during the month of September. Please check out their site. They sent us a gorgeous hand carved Giraffe mom and baby lamp along with a well written and moving letter. It will match perfectly with our stuff in our bedroom (by the way, this is the company that donated Big Sophie).
You may wonder how my post can seem so upbeat. Don't kid yourself and think I haven't had about four or five good breakdowns today. The thing that has been my biggest comfort is that we have been surrounded by our loved ones today. Andrew's dad and stepmom, Drew and Jane, drove in from Santa Fe today. We had all our parents in the room today when Dr. Goldman came in. Mary and Bob Albritton came to see us. Bob and I had a beautiful conversation before he left. Thank you, Bob. Mary is still rocking in the chair with us right now. She calms me. Abby and Maggie, you are two lucky little girls to have two such wonderful parents. Hope you know that. Dana and Annie joined us for the party this afternoon. They gave us a gift we will keep forever. It is a gift certificate to Calloway's nursery to purchase a tree. We will plant this tree in memory of our Allie in our backyard. One day, Allie's brother or sister will play under that tree and we will tell them about their angel sister.
My brother, Jeremy, is in town from Houston. My uncle Mike, my dad's brother, flew in tonight from Indiana to be here with us. Again, this was supposed to be a surprise. Another certain relative of mine (this one being two yrs older and lives in Houston) spilled the beans. Noticing a pattern here?
The support of my family and friends has been incredible. To Jim--thank you for what you did for me today. Even in your sorrow for your granddaughter, you were able to be there for me. I am so thankful that it was you on that couch with me.
OK, Andrew and Mary are now making fun of Sophie. Poor Sophie has been usurped by the ring mouse.
I'm ending tonight to be with my family. To my family, I love you all. Everyone on the floor has commented to me today about the amount of support Andrew and I have gotten from you. Frances and mom, you have been faithful and loving to us everyday. We love you all so much!
--Jenny, Andrew, and our angel Allie
Thursday, Sept. 9th--Day Fifty-Four
10:45pm--Family and friends came last night to be with us and Allie. We allowed more people in the room than usual, each getting to see the baby. She slept peacefully while we talked by her side. The last visitor left around 9:30, and Andrew and I were determined to get to bed.
Neither of us could sleep, so we each did our respective wind down activities--me on the computer, him on the Xbox. By midnight, we cuddled on the couch together to talk. I climbed in bed with Allie a little later and tried to sleep. One to two am was my sleeping time. Allie's breathing is labored, and its hard to listen to. She has mucus secretions that get lodged in her throat and mouth. We have to use a suction device, much like the one at the dentist's office, to suction out all her mucus. The main problem for me wasn't Allie struggling with sleeping. My brain was racing. My mind couldn't stop. I sat up in bed around 3 only to find Andrew was having the same problem. We talked a little and calmed Allie when she cried. For the majority of the night, we closed our eyes, alone with our thoughts, but didn't sleep. Andrew fell asleep around 6:30, but I just couldn't. I finally caught a little sleep between 8:30-9am. I did manage to get a little nap in for about an hour, but that's its.
Allie woke up this morning around 7:30. We stared at each other and caressed each other's faces. It was a moment I will never forget. She looked at me with love, and I, of course, gave her nothing less in return. The exchange only lasted all of five minutes, but it was one of the best five minutes of my life.
Since then, Allie has been awake very little. She continues to have issues with the secretions needing to be suctioned out. She had a bloody nose and low platelets, so her nurse Anne called the doctor to have her transfused.
Sweet Sammy had to have both a colonoscopy today to find out the nature of his GI issues. He couldn't take the "cleansing" medicine last night, so they had to insert a tube down his nose. Pure torture for Dana to watch. Nothing harder than watching your child hurt and be helpless.
Dana and I talk at least three or four times a day, if not more. This afternoon, she invited us to come to Sam's room, stating that she didn't think he was infectious. We need that we would be precautionary--wash up well before and after leaving his room, and keep our distance. Sitting with Dana helped us decompress a little. We were able to laugh a little even. Felt good to laugh. As we were sitting there, we saw Dr. Lenarsky through the window, about to come in Sam's room. BUSTED!! Oh yeah, we were busted! I don't think he was pleased about us being there. He gave us some looks. We all slid in our seats like school children caught breaking a rule. Gave us a good giggle. You know what? I don't care. We needed her and she needed us.
Our floor is full of sadness tonight. Our neighbor Ted Wren is coming to the close of his life. He has battled multiple myeloma for quite some time. His kidneys are now failing him and the doctors do not know how much longer he has (no longer than the weekend). Ted's mother, May, is one of the most amazing women I've ever encountered. She is in her seventies, but her spirit and heart is ageless. Ted's two children as well as other family and friends have gathered in the waiting room. I had to speak to May. I went there and hugged her. The two of us held each other and cried. Both mothers wanting no more suffering for our babies. Doesn't matter that her baby is much older than mine, he is her baby no less. I sat with May and held her hand while we talked with her family. At times, I offered comforting words to her, and at others, she gave me strength and comfort. I told her that I think Ted is going to get to Heaven before Allie so that he is ready to be there for her when she comes. My heart is sad for Ted and his family. I pray that his passing is gentle and peaceful, full of dignity, grace, and peace. Please keep Ted's family, especially May and his two beautiful children (I say children, but one is a teenager and the other a college student) Haley and Joel, in your thoughts and prayers.
This hospital has become Allie's home. Our home too. These people who live here with us are more than just neighbors. They are an extended part of our family. I will be friends with Dana and Annie for a long time (and yes, Annie, I promise I will be able to come to your house). I hope to keep in contact with May. We love our nurses so much. Taking Allie home is not an option. Besides the fact of not wanting to see our baby die in our home, we don't want to uproot her from what she knows. She has lived here almost the exact same amount of time that she has lived at home. She needs to be here. We need the strength that the doctors and nurses pass on to us.
Both Dana and Annie came in to see our sleeping sweetheart late tonight. This was the first time Annie has ever touched Allie. She has seen her through the window playing on the floor, watching Baby Einstein, or up close to the door blowing her famous raspberries. She saw her out in the hall once or twice, but she has never touched her. For safety measures, they garbed up in gown, mask, and gloves. Dana came in first. We listened to her lullaby cd and all laid around her. While Annie was in, she gently touched her face and commented on all her perfect features.
Annie said she felt that we are both lucky and blessed. Though the sadness is there, there is so much to celebrate. We are the luckiest people in the world. We got to hold a real angel in our arms. We have been blessed every minute we've been Allie's parents. Our lives have been bettered because of her. We need to find the joy in what's happening here. That may sound strange coming from me, but it's truly how I feel. She is my joy and my blessing, and I will celebrate her life. Please celebrate it with me.
Love to you all, Jenny, Andrew, and our angel Allie
Wednesday, Sept. 8th--Day Fifty-Three
2:30pm--Medical treatment has been stopped for Allie. No more gleevec, no mylotarg, no chemo, no neupogen. Nothing is working, simply causing her pain and discomfort. We risk aspirating into her lungs and causing pneumonia if we continue with the gleevec (since she is so sedated, she isn't swallowing well). Mylotarg would rip her to pieces. Dr. Weinthal said something yesterday that has stayed with me. He believes, and I have to agree with him, in human dignity, even in infants, and especially in death. Just because a drug is out there, does not mean we have to use it. Not when we know it would hurt her even worse. We will not strip her of her dignity.
Blood tests will only be done every other day from now on. She is not making her own red blood cells, and it doesn't make sense for us to deplete her even more each day with blood tests. Dr. Weinthal feels that there is a strong possibility that the leukemia has spread to her brain. This is a likely place for it to go, especially after a relapse. The only way to know for sure is to do a spinal tap. We won't do that. It would hurt her and we wouldn't do anything with the information.
"Comfort measures" is what is being done now. She remains on her fentanyl and versed drips and TPN and lipids for nourishment. Blood transfusions will be done as needed. Red cells give the body oxygen. Suffocating to death is not something we want to see happen. Without platelets in her body, she would bleed to death. She needs oxygen to keep her at an acceptable level. Her fevers still persist, at least once or twice a day. She isn't arching her back anymore, so I think she does feel better now that the neupogen has been stopped.
We don't know how long Allie has. Days, maybe weeks. When she is awake, we try to make the best of our times. We need to make our minutes feel like months and our hours feel like years. We don't have years with her, so we want to appreciate and value our time together. We kiss her all over. I spent twenty minutes this afternoon just gently rubbing her foot.
She has been awake a few times today. Once for over an hour and a half. She doesn't cry, simply looks around. As of now, her pain is being managed. She clutches her new favorite toy, a little pink ring with a mouse face, at all times, even in her sleep. She has given us a few raspberries and stroked our faces.
Dana and I can't see each other right now due to the restrictions and Sam's infection. Sam is still having a really hard time. We call each other every day. I think we've spoken at least three times already today. The contact isolation restriction has been lifted on patients that have tested negative for Cdiff, which Allie has. However, they still want to limit socialization. Annie is next door and I so want to visit with her, but I can't. Annie told Andrew last night that Fieldon did test positive. So for now, I think of them and they think of us, but don't see each other.
I won't lie and say I'm okay. I'm not. Seeing my baby like this is the worst imaginable. I alternate between despair, numbness, and peace. I do feel a bit at peace with this. I'm not okay with it, but I am looking for peace. Allie's life has been beautiful. I want it to be beautiful until her last breath. People live their entire lives without influencing others on making a significant impact. In her less than nine months, Allie has changed the way people love their families. Her life, brought to you by my words and Andrew's website creation, have reached people as far as Australia, Ireland, Hong Kong, and every state in the US. We get over 10,000 hits to our website a day. Sometimes closer to 20,000.
Allie has made me a better person. I know she has impacted many people. I know that her story will live on. People will go out and donate blood, sign up for the bone marrow registry, participate in events such as Light the Night and Team in Training. They will do this and remember Allie.
In the time we have remaining with Allie, we are going to try to celebrate her life. We will have to make some difficult decisions. We don't want to stress over our financial struggles, though I know we will incur some. We want to focus our energy into loving Allie, loving each other, and loving our family and friends.
Please pray for comfort, no infections to hurt her worse, and for an easy passing. I will hold on to the hope of a miracle, but I also need to try to accept what will most likely happen. We don't want this to extend long for her. That is not a good life.
I think she is getting ready to fly....my angel on earth needing to return to Heaven.
Jenny, Andrew, and our angel Allie
Tuesday, Sept. 7th--Day Fifty-Two
9:30pm--Not many changes. Nothing to post tonight. I'm really mentally and emotionally drained. I'll post tomorrow.
Monday, Sept. 6th--Day Fifty-One
8:30pm--Our floor has been placed on contact isolation. There has been a number of cases of a GI infection called CDif (what Sam has) with several of the adults on this floor. It manifests itself in excessive diarrhea, stomach cramping, and a few other things I do not know. The nurses are wearing gowns and gloves along with their normal masks when they enter any room. All items are removed and thrown away before they leave the room. If we, or any other caregiver on the floor leave the room, we must wear a gown and gloves too. No mask required for us since it is spread through contact, not airborn. We have to gown even to go to the pantry next door or talk to a nurse at the nurse's station. Keeps us in our rooms even more for fear of infection.
**Due to the contact isolation, we will not be using the family room for meals. If you are providing a meal in the next week: *make for 4-6 people only *no fresh fruits of veggies, including salad. We can't have these in Allie's room. This has not been an issue for us as of late since we usually eat in the waiting room. The gowns, and especially the gloves, are so hot that you are miserable after three or four minutes. We will be having all our meals in Allie's room for the time being.
Allie's potential for infection is extremely high. An infection would increase her chances of death. As it is, I don't know how much time we have with her. We won't to minimize her risks for more harm.
I was thinking today of all the medication she is on. Here's a list to give you an idea:
*Gleevec, in hopes of killing the blasts *Steroids, to help the GVHD not go to the GI tract *Antibiotic, preventative *Continuous drip of fentanyl, for pain management *Continuous drip of versed, to "take the edge off" *Neupogen, to boost the white cells *TPN, for foods *Lasix, to help her pee *Lipids, to give her body fats *Toradol, for pain management *Tylenol, when its too soon for toradol and she has a fever *Procardia, when her blood pressure is too high. *Vistiril and benadryl, alternated every 3 hours for itching
Plus, we have red cell and platelet transfusions every few days as needed. What a lot for a person not even nine months old yet.
Allie had another decent day. She was never real happy, but she did minimal amounts of crying. She was awake and responsive to her toys. She sat in my lap for hours while Andrew, Frances, and I played Trivial Pursuit. It was the longest game we've ever played. With interruptions and the really hard questions, it took us over four hours to finish one game! As usual, Andrew beat us. I don't know that I was even playing the same game, I was playing that badly. The whole time, Allie played in my lap with her toys and finally nodded off to sleep. Trivial Pursuit isn't really exciting for an infant.
Her whites are the same, 300, and her blasts are now 36%. I believe we are nearing a time where time is of the essence. I don't know how much time we have left with Allie. Tonight, I did some research on possible alternatives for relapsed AML patients. Not a lot was found. Most say to be followed by transplant. It is too soon for transplant. The only thing I found was about mylotarg. The problem with mylotarg is that it is so toxic. Dr. Weinthal said a few weeks ago that he felt it could potentially hasten her death. She looks better than she did at that time (when she had 67% in her blood and we had her on much higher doses of sedation). I'm so panic stricken right now that I don't know what to do. The "what ifs" are in every thought. What if this works and we buy some time with her? What if it hurts her organs (which it usually does)? What if it causes an infection? What if this is the thing that can save her and we don't try it? What if we do try it and it makes her die even faster with more pain? We will talk to the doctor rounding tomorrow. I want to hear what his thoughts are.
It seems to me that we are coming to the point of comfort measures for Allie. Treatment is still continuing with the gleevec, but it isn't proving to do much now.
Allie is awake and watching Baby Einstein. I'm going to end now and be with her.
--Jenny, Andrew, and Allie
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