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March 27, 2015

Theo’s test results all came back negative. The doctors concluded that he is probably fighting the same virus that the rest of the kids are, just in his own way. He spent three days on IV fluids and we came home after lunch today. He went straight to bed, but I am encouraged and thankful for the boost. We will return on Monday for a check-up.

Thanks again for praying for Theo. Thank you also for all the Facebook and blog comments. When I get a free minute I always read your comments. It is so encouraging to know we aren’t going through this alone. Thank you for your friendship.

Enjoy your Palm Sunday

John 12:12-13

The next day the great crowd that had come for the festival heard that Jesus was on his way to Jerusalem. They took palm branches and went out to meet him, shouting,

“Hosanna!” “Blessed is he who comes in the name of the Lord!” “Blessed is the king of Israel!”

 

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3 South

TS

March 26, 2015

3 South is the name of the oncology floor at CHOP. 3 South is where I am writing from today.

The past two weeks have definately been the most difficult for Theo to date. He follows me around the house and lays at my feet. Sometimes we look around and realize he disappeared and we find him asleep in his bed. His emotions are completely out of whack because of the steriods. He doesn’t talk to the kids or Scott when he is feeling his worst. I have searched through my CHOP binder many times to determine if his behavior is “normal” or worthy of a trip to the doctor.

I’m learning there’s a natural curve of behavior after chemo. Last Friday Theo was back to his normal self because he was one week post chemo. The following Monday he started digressing with no explanation. Tuesday night the kids and I were up all night with the stomach bug, so when Theo didn’t get out of bed on Wednesday I wondered if he was getting it next.

I called the nurse to check in and she asked to see him. I was still very sick so Scott left work early to take Theo to KOP. Theo’s temperature was 99 at home but by the time they were settled at the office his temperature was 102.

Praise God for His timing, that He would be so gracious to prompt us to get Theo to the doctor before his fever. If Theo had spiked a fever of 102 at home, he would have been at least an hour away from any help. The fact that he spiked in the office meant immediate IV fluids and antibiotics and the doctor’s eye. We are grateful.

The doctor decided to admit Theo by the end of the day. They told Scott they wanted to transport him, which was a new experience for everyone. I debated whether or not to share this picture, but this blog is to document Theo’s journey, and this is how we roll now.

We are here awaiting test results for a possible infection. Theo does not have a fever this morning, so that is encouraging. He still isn’t himself, he won’t eat or drink, so we’ll see how the day plays out.

Thanks for reading along with us.

Psalm 143:10
Teach me to do your will,
for you are my God;
may your good Spirit
lead me on level ground.

Tears and Gratitude

March 15, 2015

It’s 2am and Cali just fell asleep after vomiting all night. Obviously she was chewing the wrong toy at co-op on Friday. You gotta love church nurseries.

Theo has done really well these first 15 days of Phase 4. His counts have been stable and he has stayed on track with all of his medicines. He is now done both his doses of PEG (the allergic reaction drug) and he is done all three of his doses of DOX (the heart weakening drug.) He takes several medicines at home but he has two weeks off from IV medicines. He is such a trooper.

I, on the other hand, am a mess. I have cried every day for two weeks. I suppose that is normal in these circumstances, but let’s be honest, I’m a little out of touch with normal these days.

If you’re in the mood for stories, here you go…

Walmart…
Normally it is my personal rule to avoid Walmart after 10am on any given day. However life is a little crazy right now so I found myself at Walmart on a very crowded Friday night. With my cart packed to the max I stood in line behind a man who was shopping with his wife and daughter. His cart was just as full as mine. As the cashier announced a grand total of $245, he quietly handed her back two packaged steaks. He looked at his wife, and she quietly shook her head as she re-counted the handful of bills in her hand. The man started looking for something else to put back when I popped in and said, “How short are you? I have a ten in my wallet.”

I handed him the $10 before he could answer and then buried my head in my cart as to spare him any more embarrassment. When I emerged from my cart he handed me change and said the most sincere thank you. I looked at him and said, “People have helped us so much this year, I know exactly how you feel.”

It was all I could do to keep myself from breaking down and crying on this man’s shoulder. He had no idea that my lousy $10 was nothing in comparison to the help we have received these past five months. I cried myself all the way home that day, broken with gratitude.

The Orthodontist…
A few days later we were on our way to the orthodontist. I really like the office manager there and I always look forward to talking with her. We haven’t been there since August, so she had no idea what was going on with Theo. We ended up talking and I handed her our prayer card. She asked me, “Was this a holiday picture?”

I said, “No, our son is sick so we made up these prayer cards to give to people.”

The woman sitting next to her, who I do not know, said quietly, “We go to Calvary. We have been praying for Theo.”

Cue the tears. I sobbed right there at the counter. I tried to make a joke about how I shouldn’t be allowed in public, and then sat down and waited for people to stop staring at me. I never really got it together. I was overwhelmed to know that strangers were praying for Theo. Again, I cried myself all the way home, broken with gratitude.

The Kids…
The next day one of our daughters came to me crying saying she didn’t want to go to co-op. She said it was too hard to go without me. I called two other kids over and they started crying too, sharing their thoughts. For the first time in a long time, I had nothing to say, so I started crying. I cried so hard I think I startled them, and then one kid started laughing. Ah, kids.

A Phone Call…
The next day I got a phone call. It was a woman who had lost her 3 year old son to Leukemia. She was now running her own non-profit organization and wanted to invite us to a Sixers game. It was very special to talk with her, but I hung up and started crying. I was so sad that her son had died. I was so thankful that our son was still alive. Poor Scott, he is always trying to keep up with me and my emotions, so he made a joke and then tried to figure out why I was crying. I cried and cried, broken with gratitude.

My Journal…
I was journaling yesterday and at the end of the page I tearfully wrote, “This has been a very hard journey, but Your companionship is well worth it.”

Hopefully I’ll get it together soon, but in the meantime I know that God is with me, all the time.

Psalm 56:8
“You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book.”

So Far So Good…

March 2, 2015

It is 5pm on Monday and Theo shows no signs of an allergic reaction to PEG. Thank you for praying!

Matthew 18:19-20
“Again, truly I tell you that if two of you on earth agree about anything they ask for, it will be done for them by my Father in heaven. For where two or three gather in my name, there am I with them.”

Phase 4

Sunday, March 1, 2015

The last 15 days of Phase 3 were wonderful. We didn’t mention CHOP once. Theo was his old self, I treasured our school time, Grandmom took some time off and we even visited church on Sunday (in between services though.)

My inner child did not want to go back to CHOP for Phase 4. I wanted to turn the car around and take Theo to a Cancer-Free Wonderland. Except, I didn’t know of any Cancer-Free Wonderlands, and the grown-up side of me knew that CHOP would be our best option.

Friday morning was Day 1 of Phase 4, medically known as Delayed Intensification. Theo started the day with a spinal tap. This accomplishes two things: first, they remove a sample of spinal fluid to check it for cancerous blasts under the microscope; second, they inject a medicine into his spinal fluid to pro-actively treat his brain for cancer. Theo does so well on these days. He is quiet and cooperative, he wakes up hungry and thirsty but not grumpy. He is such a sweet boy.

In addition to his spinal tap, Theo received Vincristine. I have come to understand that this is the easiest medicine on his treatment plan. He also received a new medicine known as DOX. This one is bright red, may cause mouth sores and could cause heart damage in the future, but we’re told the benefits outweigh the risks. We saw the impact of DOX pretty quickly as Theo threw up Friday night in spite of the anti-nausea medicine. Last, Theo started a daily dose of steroids given at home. This will hopefully help him eat when normally he wouldn’t want to eat, but it will also make him tired and emotional.

Monday morning Theo will return for another medicine known as PEG. There is a high risk of an allergic reaction to PEG, especially the second dose (he received his first dose in the hospital back in October.) Apparently the allergic reaction could happen in the car on the way home, or even once we get home. We have been schooled with a list of reasons to turn around and return to CHOP and a list of reasons to call 911.

We would really appreciate it if you could pray for Theo tomorrow morning. I feel safe while we are at CHOP, I know they can handle a reaction swiftly and I trust they will take great care of Theo. I am, however, a little on edge about us coming home and watching for a reaction ourselves. It is a mental discipline to find that line of doing everything you can humanly do as a parent, and then to let go and trust that God is ultimately sovereign.

I’m sorry I called David a drama queen a few weeks ago. I find myself identifying with his words more and more…

Psalm 63
You, God, are my God,
earnestly I seek you;
I thirst for you,
my whole being longs for you,
in a dry and parched land
where there is no water.
2 I have seen you in the sanctuary
and beheld your power and your glory.
3 Because your love is better than life,
my lips will glorify you.
4 I will praise you as long as I live,
and in your name I will lift up my hands.
5 I will be fully satisfied as with the richest of foods;
with singing lips my mouth will praise you.
6 On my bed I remember you;
I think of you through the watches of the night.
7 Because you are my help,
I sing in the shadow of your wings.
8 I cling to you;
your right hand upholds me.