Justin is sleeping. Jeff and I are sitting on the couch in the hospital room sharing a box of white cheddar cheezits (dinner?)

This is the first chance we’ve had for an actual conversation. We agree that when we think about what Justin is going through from his five-year-old point of view, it just breaks our hearts in half.

But then Jeff said, “This may be our only chance for a date in a long time.” A date. Sitting in a hospital beside our incredibly ill son eating cheese flavored crackers. The absurdity made me laugh.

Laughter through tears. Beautiful thing. Grace be with you, my friends.

God hears our prayers. Justin is responding well to the treatment. He looks and feels a little better today! He was able to eat a slice of pizza and he colored a picture!

We are starting to understand the ups and downs of this disease as well as the rollercoaster of chemotherapy.

Leukemia will cause fevers to come and go. He will also continue to experience drops in his hemoglobin level, requiring a blood transfusion, but not necessarily everyday.

Justin will also have different reactions to the various medications that comprise chemotherapy. Some days he will be nauseous and vomiting while other days he may feel very hungry.  There are many other possible side effects. But I try not to think about that.

We had a fever-free day as well as medication that doesn’t cause nausea. Justin has been able to eat, interact with visitors and even play some with Legos.

I realize that tonight or tomorrow could swing the other way into sickness and discomfort. But I am so grateful for this break we’ve been blessed with today.

Thank you for praying. I feel the presence of God here and I know He continues to sustain us.

Please continue to pray for us! Justin is still not able to bear weight on his legs because of pain and bone damage in his feet, but his doctor expects him to fully recover his ability to walk. Justin will have physical therapy beginning tomorrow. Please pray that he will be able to overcome his fear enough to comply and not experience too much pain.

We were told the leukemia could possibly be in remission at the end of this 30 day cycle of chemotherapy. We are praying toward that outcome, but also trying to trust God’s will.

I should really wash my hair. 

James 1:2-6 “Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing. If any of you lacks wisdom, let him ask God, who gives generously to all without reproach, and it will be given him. But let him ask in faith, with no doubting, for the one who doubts is like a wave of the sea that is driven and tossed by the wind.”

Several of you have asked about donating blood for Justin. First of all, thank you. I spoke to the oncology nurses about this. Their response was that there would be no way to ensure that Justin would receive any particular blood donation. But general donations are always needed if you’d like to donate to your local American Red Cross facility. You can always donate “in honor of Justin.” He will be receiving regular blood transfusions.

However, food donations would be much appreciated to the Ronald McDonald house located on our floor. There is a house in the oncology department here at CHOP which provides free services to families of long term patients such as meals and laundry facilities. Last night, they provided pizza and cupcakes to all families on our floor.  As you can imagine, food and coffee can get expensive for parents staying long term. Anyone interested in donating to us or the hospital, I would like to encourage you to consider contacting the Ronald McDonald house on the oncology floor at CHOP so that other families can benefit from donations on our behalf. (Our room is currently well stocked with goodies and snacks! Thank you!)

Justin’s ultrasound came back normal. Thank you for praying.

Justin was able to sit up in bed and eat a few bites of ice cream. He also sat on the couch in our room for a little while and played Legos with Jeff. We were able to coax a few smiles from him and, to me, it was sunshine.

He is still experiencing so much pain when he is touched or moved. Just rolling over or getting his blood pressure taken is extremely painful. I dread each time vital signs are taken.

He is also running a high fever again so that is adding to his distress as well.

He still cannot bear weight on his feet and carrying him to the bathroom each time became too difficult. Changing the diapers and disposable pads also causes pain and discomfort. He cries out even at the slightest touch.

I am admittedly feeling worn down by watching him suffer. But I am continuing  to trust and trying to take heart that it will pass.

Hoping the night is quiet and relatively pain free.

I am cherishing those smiles from earlier this evening.

2 Corinthians 4:16-18

So we do not lose heart. Though our outer self  is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

We are waiting on results of the kidney ultrasound. Justin responded well to the blood transfusion and so far the chemo has not made him sick today! He even ate a few bites of cereal! He’s still in a lot of pain and traumatized. I see fear in his eyes every time the door opens. So Jeff and I are staying close. In fact, I haven’t been off the oncology floor since we got here Sunday. I’ve been encouraged to take breaks, but I just can’t.

I am exhausted and emotionally drained but God is sustaining me.

I have thought in the past that I would never be able to handle something like this. One of my children fighting for his life. Sitting by helpless hour after hour. Wanting so much to absorb his pain to no avail. Apart from Christ, I would be completely falling apart. But I am still knit together by the loving hands of Jesus.

So in this moment I am thinking of a plaque on my wall at home. It says, “There is always something to be thankful for.”

The Lord is my light and my salvation;
whom shall I fear?
The Lord is the stronghold of my life;
of whom shall I be afraid?

I believe that I shall look upon the goodness of the Lord
in the land of the living!
Wait for the Lord;
be strong, and let your heart take courage;
wait for the Lord! (Excerpts from Psalm 27)

I am continuously overwhelmed by your love and support. We’ve had videos sent, homemade food, gifts, cards and offers to donate blood. We are extremely touched and thankful for such good friends. Grace be with you.

Justin has high sodium levels in his blood, which the oncology doctor said can cause kidney problems. He will have an ultrasound shortly.

Justin is receiving the blood transfusion now and seems to be responding well.

He is still in a lot of pain. I’m respectfully demanding to up the morphine dosage. Yes I did ask nicely.

He is scared and uncomfortable. Jeff is trying to cheer him up by building Legos and playing video games. But no smiles yet today.

Psalm 27 – “The Lord speaks to my heart to come and seek his face. And my heart responds, your face Lord I will seek.”

I’m recalling that verse from my reading earlier. I’m sure I’m getting the exact wording wrong, but this message is constantly on my heart.

 

Justin has never been one to shy away from saying how he feels. He’s told a nurse, “You’re not the boss of me.” He’s told me, “I hate you mommy.” (I know it’s only the anger and fear talking) But the most difficult to hear is a phrase he keeps repeating, “I want to go home.”

Me too, baby, me too.

Justin’s hemoglobin level is too low so he needs red blood cells. He will have a blood transfusion this morning. He will have his second dose of chemo later today.

The morphine continues to keep him relatively pain free, but he can not stand to be moved or touched. His bones, particularly hands and feet, are still causing him a great deal of discomfort. He cannot bear weight on his feet at all. He is a baby again. We have been carrying him and I had to put a diaper on him. Carrying him to the potty became too painful.

I finally got around to brushing my teeth. I saw a pale, puffy, ragged looking girl looking back at me in the mirror.

“I will lift my eyes unto the hills from whence cometh my help. My help comes from the Lord who made heaven and earth.”

I don’t remember the scripture reference, but this passage keeps coming to mind. I must have memorized it at some point.

O Lord, come quickly and be my help. Reach out your healing hand and touch my boy.

Sitting at my baby’s side. Holding him. Whispering words of comfort. Hating the vomiting and stomach pain that has come on. The fear in his eyes every time a nurse or doctor comes in.

There’s no way to prepare a mother for this. I think of Mary, mother of Jesus. What a beautiful, precious calling. But what an incredibly difficult, unimaginably painful task she was given as she would one day  stand at the foot of the cross. Her baby.

I know there is a GOOD purpose in every trial God’s children face. But doubt knows how to creep in right at those moments of exhaustion. I’m trying to choose to ignore doubt and listen to the voice of truth.

“For we know that all things work together for good to those who love Him and are called according to His purpose.” Romans 8:28

I am so grateful for your faithful, relentless commitment to pray for us. I am reading all of your comments and encouragement. I appreciate more than you know. Grace be with you, my friends.

The type of leukemia Justin has is called A.L.L. It is cancer of the blood and bone marrow. It is aggressive but very treatable with good response from children at early onset. There is a 95% success rate in curing this disease. That means 95 in 100 kids are completely cured.
Lord, let Justin be in the 95.

It is possible for the cancer to be in remission after the first 30 day cycle of chemo. Pray along with us for that outcome!

Justin is sick again. Sometimes I think it hurts me more than him.