It is Friday night as I sit down to write this, and most likely it will be Saturday before I get it posted because this is a long one...
One second after hitting "publish" on Thursday night's post, and letting you all know that things were running smoothly, Sophie woke up screaming that her tummy hurt. She was moaning and crying and climbing all over me. I could not console her - my Mom called ST. Jude's and spoke to the doctor on call, and he said bring her in. Somehow, I managed to calm her down and she fell asleep before my Mom relayed the doctor's order. So, we called back and asked if we should wake her...he laughed and said no, and that she must not be in too much pain. 5 minutes later, she was back at it again, and when I felt her stomach it was bloated and as hard as a rock. My Mom, Dad and I drove Sophie to the "Medicine Room" at St. Jude's. (Marc was at the Ronald McDonald House with Sarah who has managed to get a cold. She's been pretty miserable and is having a hard time eating and sleeping because of the congestion.)
Sophie continued to act as though she was in excruciating pain; in all of her 3 and 3/4 years, I had never seen her act that way, so I was getting nervous. They took her vitals, and her blood pressure was quite high. The doctor came in, ordered a morphine drip for her port, as well as a stomach x-ray. He said it most likely seemed like gas, but wanted to be sure there was no obstruction. She calmed down a little from the morphine but her blood pressure was still high. We kept asking her if she needed to throw up, since she is pretty good about letting us know these days, and she repeatedly said no. Shortly after waiting in the room for the x-ray tech to be ready, Sophie said she needed to throw up. The nurse grabbed the pink pan, and Sophie threw up more food than I thought her belly could hold. It was gross, she was sitting on my lap, and my Mom was wiping her face and gagging at the same time. I kept thinking, "Please God, isn't this enough?" Thinking of how Sophie needed me to be strong was all I could do not to breakdown and sob. Sophie immediately said she felt better, and then she started to act sleepy and a little loopy from the morphine and made me smile with the funny things she said. We went for the x-ray, and again, she was so brave. Laying down on her back on a hard table was scary for her, but she managed to relax long enough for the tech to snap the picture that she needed. Her x-ray of her chest and lower abdomen came up on the computer screen and we were showing Sophie her tummy and ribs, and her port. She just looked, and then all of a sudden she said, "There's my vagina!" Leave it to Sophie...the tech got a kick out of that one!
From the x-rays, the doctor was able to determine that Sophie's belly was blocked up. He pointed out the stool in her intestines and the gas and food in her stomach. Basically, she was holding as much food in her as she could, but none was going anywhere, so she vomited to get rid of the food that wasn't moving through her GI tract. NICE. He prescribed a dose of laxative, and then said he would order her a 24 hour dose of her anti nausea meds and then her nightly dose of steroid to be given in her IV so that we wouldn't have to do the doses when we got back home. It was about 11:15pm at this point. While waiting for the IV hook up, and the medicine drips, Sophie threw up yet again. This time it was the few sips of water that she had just had. She fell asleep on my chest while receiving the medicines. We left the hospital with a very sleepy Sophie and two prescriptions; one for the laxative and one for Tylenol with codeine. At times it is hard for me to feel good about pumping all this medicine into her body.
She didn't want to drink the laxative when we got home, so we let her sip it all night. She wasn't in the mood for the nightly picnic we had been having, and I was anxious because I knew she wouldn't be able to eat after 2:00am because of her radiation scheduled for 10:00. She also did not want to lay down. She kept saying she was dizzy and insisted that I sit up in bed and she sit up against me. She finally fell asleep like this around 2:00am and then at 4:00am I was able to lay her down next to me where she slept until 5:45am. We were all exhausted!
By 7:00am, she was saying she was hungry. She had a little jello and a Popsicle and other clear liquids with her meds until 8:00am, but still was hungry, and grumpy.She sat on the couch in a daze until it was time to go for radiation. While waiting for her appointment, she fell asleep again in my lap, and then again while waiting for the sedation team. She continued to say she was dizzy and that she wanted to sleep. She fought the anesthesiologist a little bit, but couldn't fend off the sedation drugs, and went to sleep for her radiation.
While I waited for them to call me back to recovery, I noticed a family of a little girl who I knew was being treated at St. Jude's for a DIBG just like Sophie. I recognized this family from the prayers from Maria website. The little girl's name is Madeline Adams. She too is 3 years old, and just finished her radiation last week and was back for a follow up MRI. You can read her journal at caringbridge.org. I talked to her father a little bit, which was a comfort in an odd sort of way. Marc met me in the waiting room after loading a wagon full of packages from the mail room into the car, and he joined in the conversation while I went to the recovery room to get Sophie.
Sophie was especially groggy today and so sleepy in the recovery room. She didn't want to wake up, and I could hardly understand what she was saying as she came out of the sedation. She didn't even want the Oreos that the recovery nurses have been giving her the last couple days. She didn't want to put her clothes or shoes back on and she was pushing me away and pulling me to her at the same time. While this was happening, our oncology team got word of our stomach experience the night before, so they wanted to squeeze in a clinic visit before we left the hospital - so much for our easy day...
Our oncologist said Sophie should have an enema so that she would have immediate relief. I forgot to say that during the entire clinic visit she slept on my lap so now we had to wake her for the enema. Sophie's nurses were so kind and figured out a way to give it to her on while she remained on my lap; only after they had covered me with hospital pads and blankets! Again, Sophie amazed me at how well she cooperated. We briefly told her what would be happening; she wasn't excited, but still did pretty good. I'll spare you the rest of the details; the enema worked and you get the point. After all was said and done, I was sure relieved that we did it. Her tummy immediately softened up, and she said it felt better.
The OT appointment was canceled again - too much for Sophie in one day. We came home, took a short nap, resumed our medicine regimen and Sophie seemed more like herself. She was definitely tired, but her mood was okay. She had some lunch and opened her packages. We all shared a few laughs and she went to bed pretty good at night.
Now it IS Saturday morning, and I am just finishing. We now have a short clinic appointment at 10:30 as a followup for her stomach issues...hopefully tomorrow we really WON'T have to go back. Her radiation on Monday is at 9:30 so it is getting earlier which will help with the no eating. It was funny this morning, or sad actually. Sophie asked for jello when she woke up, because she has gotten used to that being the only thing she can have. When I offered her eggs, she looked like she had won the jackpot!
Thank you all for your continued prayers, support, words of wisdom, cards and gifts. We do appreciate it, and it helps us get through the days. We've had a few moments of despair and fear lately, but then we remember all the people who are rooting for us and it helps us to be strong. We really are hoping to go to the zoo on Sunday because the weather is one thing that is perfect; and we must appreciate God's little miracles.
One second after hitting "publish" on Thursday night's post, and letting you all know that things were running smoothly, Sophie woke up screaming that her tummy hurt. She was moaning and crying and climbing all over me. I could not console her - my Mom called ST. Jude's and spoke to the doctor on call, and he said bring her in. Somehow, I managed to calm her down and she fell asleep before my Mom relayed the doctor's order. So, we called back and asked if we should wake her...he laughed and said no, and that she must not be in too much pain. 5 minutes later, she was back at it again, and when I felt her stomach it was bloated and as hard as a rock. My Mom, Dad and I drove Sophie to the "Medicine Room" at St. Jude's. (Marc was at the Ronald McDonald House with Sarah who has managed to get a cold. She's been pretty miserable and is having a hard time eating and sleeping because of the congestion.)
Sophie continued to act as though she was in excruciating pain; in all of her 3 and 3/4 years, I had never seen her act that way, so I was getting nervous. They took her vitals, and her blood pressure was quite high. The doctor came in, ordered a morphine drip for her port, as well as a stomach x-ray. He said it most likely seemed like gas, but wanted to be sure there was no obstruction. She calmed down a little from the morphine but her blood pressure was still high. We kept asking her if she needed to throw up, since she is pretty good about letting us know these days, and she repeatedly said no. Shortly after waiting in the room for the x-ray tech to be ready, Sophie said she needed to throw up. The nurse grabbed the pink pan, and Sophie threw up more food than I thought her belly could hold. It was gross, she was sitting on my lap, and my Mom was wiping her face and gagging at the same time. I kept thinking, "Please God, isn't this enough?" Thinking of how Sophie needed me to be strong was all I could do not to breakdown and sob. Sophie immediately said she felt better, and then she started to act sleepy and a little loopy from the morphine and made me smile with the funny things she said. We went for the x-ray, and again, she was so brave. Laying down on her back on a hard table was scary for her, but she managed to relax long enough for the tech to snap the picture that she needed. Her x-ray of her chest and lower abdomen came up on the computer screen and we were showing Sophie her tummy and ribs, and her port. She just looked, and then all of a sudden she said, "There's my vagina!" Leave it to Sophie...the tech got a kick out of that one!
From the x-rays, the doctor was able to determine that Sophie's belly was blocked up. He pointed out the stool in her intestines and the gas and food in her stomach. Basically, she was holding as much food in her as she could, but none was going anywhere, so she vomited to get rid of the food that wasn't moving through her GI tract. NICE. He prescribed a dose of laxative, and then said he would order her a 24 hour dose of her anti nausea meds and then her nightly dose of steroid to be given in her IV so that we wouldn't have to do the doses when we got back home. It was about 11:15pm at this point. While waiting for the IV hook up, and the medicine drips, Sophie threw up yet again. This time it was the few sips of water that she had just had. She fell asleep on my chest while receiving the medicines. We left the hospital with a very sleepy Sophie and two prescriptions; one for the laxative and one for Tylenol with codeine. At times it is hard for me to feel good about pumping all this medicine into her body.
She didn't want to drink the laxative when we got home, so we let her sip it all night. She wasn't in the mood for the nightly picnic we had been having, and I was anxious because I knew she wouldn't be able to eat after 2:00am because of her radiation scheduled for 10:00. She also did not want to lay down. She kept saying she was dizzy and insisted that I sit up in bed and she sit up against me. She finally fell asleep like this around 2:00am and then at 4:00am I was able to lay her down next to me where she slept until 5:45am. We were all exhausted!
By 7:00am, she was saying she was hungry. She had a little jello and a Popsicle and other clear liquids with her meds until 8:00am, but still was hungry, and grumpy.She sat on the couch in a daze until it was time to go for radiation. While waiting for her appointment, she fell asleep again in my lap, and then again while waiting for the sedation team. She continued to say she was dizzy and that she wanted to sleep. She fought the anesthesiologist a little bit, but couldn't fend off the sedation drugs, and went to sleep for her radiation.
While I waited for them to call me back to recovery, I noticed a family of a little girl who I knew was being treated at St. Jude's for a DIBG just like Sophie. I recognized this family from the prayers from Maria website. The little girl's name is Madeline Adams. She too is 3 years old, and just finished her radiation last week and was back for a follow up MRI. You can read her journal at caringbridge.org. I talked to her father a little bit, which was a comfort in an odd sort of way. Marc met me in the waiting room after loading a wagon full of packages from the mail room into the car, and he joined in the conversation while I went to the recovery room to get Sophie.
Sophie was especially groggy today and so sleepy in the recovery room. She didn't want to wake up, and I could hardly understand what she was saying as she came out of the sedation. She didn't even want the Oreos that the recovery nurses have been giving her the last couple days. She didn't want to put her clothes or shoes back on and she was pushing me away and pulling me to her at the same time. While this was happening, our oncology team got word of our stomach experience the night before, so they wanted to squeeze in a clinic visit before we left the hospital - so much for our easy day...
Our oncologist said Sophie should have an enema so that she would have immediate relief. I forgot to say that during the entire clinic visit she slept on my lap so now we had to wake her for the enema. Sophie's nurses were so kind and figured out a way to give it to her on while she remained on my lap; only after they had covered me with hospital pads and blankets! Again, Sophie amazed me at how well she cooperated. We briefly told her what would be happening; she wasn't excited, but still did pretty good. I'll spare you the rest of the details; the enema worked and you get the point. After all was said and done, I was sure relieved that we did it. Her tummy immediately softened up, and she said it felt better.
The OT appointment was canceled again - too much for Sophie in one day. We came home, took a short nap, resumed our medicine regimen and Sophie seemed more like herself. She was definitely tired, but her mood was okay. She had some lunch and opened her packages. We all shared a few laughs and she went to bed pretty good at night.
Now it IS Saturday morning, and I am just finishing. We now have a short clinic appointment at 10:30 as a followup for her stomach issues...hopefully tomorrow we really WON'T have to go back. Her radiation on Monday is at 9:30 so it is getting earlier which will help with the no eating. It was funny this morning, or sad actually. Sophie asked for jello when she woke up, because she has gotten used to that being the only thing she can have. When I offered her eggs, she looked like she had won the jackpot!
Thank you all for your continued prayers, support, words of wisdom, cards and gifts. We do appreciate it, and it helps us get through the days. We've had a few moments of despair and fear lately, but then we remember all the people who are rooting for us and it helps us to be strong. We really are hoping to go to the zoo on Sunday because the weather is one thing that is perfect; and we must appreciate God's little miracles.
11 comments:
My heart aches for you each time I read your posts, but you always inspire me , too, with your moments of humor and hope that you experience each day. Just wish there was something we could do or say to ease this burden. Sending our love, Alex and Paula
Rest today.......gather your strengh and your courage and look forward to tomorrow. We love you all so much.
I cried hearing about how much Sophie's little system is going through. Now that you've seen the side effects of everything, hopefully the rest of your path forward will go more easily! You're doing an amazing job taking care of her!
Praying for all of you,
Kim, Chris, Grace, Rea & Kayla
All praise to the God and Father of our Lord Jesus Christ. He is the source of every mercy and the God who comforts us. He comforts us in all our troubles so that we can comfort others. When others are troubled, we will be able to give them the same comfort God has given us.
2 Corinthians 1:3-4
Emily and Marc,
Needless to say, Rick and I and our children are so sorry to hear the news about Sophie. When I Told Nick, who is now in 2nd grade to pray and showed him the pictures, he said 3 "Hail Mary's". Rick's Mom's Miriam is part of a very powerful prayer group and Sophie's name has been added to a chain that spreads through KY, OH, and IL. They pray Novenas and hope for miracles. I am in Sharon Nelson's (neighbor Legend Hills) evening bible study and we pray for you all every time we meet. Rick and I are about to make a donation through pay pal. Rick now works for National City bank and is going to tell your story to some of his people and show the website etc. He is trying to get maybe some kind of corporate donation?- no promises. Rick is now the Sr. VP at National City Bank so I am hopeful that he can do something. I am also going to help for a fund raiser that your CHRP sisters are organizing here in Cincinnati. Wine tasting and silent auction etc.... I enjoyed getting the birth announcement and your Christmas card. I think of you every Halloween when I plug in my Halloween tree (I get tons of compliments on that) and I play my "Boo" tape you made me :) I can still remember the 1st birthday party you had for Sophie like it was yesterday. Remember she liked RJ? I think he was taking her for piggyback rides around the yard. I pray that you can take 1 day at a time and you and your family have the strength to get through this. Choose Hope- and we will pray for a miracle. I'll be in touch.
Love and Prayers
The Rokosz Family
Mindy, Rick, Chelsea-going to SUA next year, RJ, and Nick
The sun is shining here today in northeastern Ohio. Hoping it is just as beautiful in Memphis as you stroll through the zoo together. Can't wait to read about the great time you are having this Sunday afternoon!
Sending all of our strength to hold you up,
Paula and Alex
We continue to pray for the whole family. There is not a day that goes by that we do not look at the updates. We are amazed at the support from everybody. We share you situation with many people on a daily basis in hopes of increasing your support from every resource possible.
Know that you are constantly in our thoughts and prayers. I hope you had a joyful trip to the zoo to enjoy that nice weather!
In Christ,
Laurann and the Collins family
Oh Emily, I am so sorry to read about the terrible time Sophie had with her tummy. I'm so glad they were able to give her some relief. I hope Sarah's cold gets better soon too. I truly hope you were able to make it to the zoo yesterday and enjoy a beutiful day together. Thinking of you all the time and praying every day for your miracle. Love you guys.
Tracy Dunn
Emily and family,
My family's hearts and prayers are with you. I heard from Tracy about Sophie, and we are praying for you and your family.
I talked to Sara (email) and she saidthis was the best way to let you know we are thinking about you.
Your old coach.....Scott Blanchard
Emily and Marc, we just wanted you to know how much we are thinking about you and praying for you. I can't even imagine how hard it must be for you to see Sophie have to go through all of this. It was hard for me to see Sean go through pain and he understands what is happening to him, so I CAN'T BEGIN TO IMAGINE your pain. It sounds like you are still able to get a few little laughs through the cute things that Sophie says. Please remember to take care of yourselves, because Sophie needs your strength. Our thoughts and prayers are with you constantly.
Sean and Jen Slater
Emily, Marc, Sophie and Sarah - we are praying for you all!! We pray that you all will continue to find strength for this tough battle you are fighting! You are always in our thoughts!
Love - John, Kelly and Hannah Ferencz
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