Cancer Mom Confessions and Update from The Hill

ABE5C015-0A42-4199-9F9A-BB09D00EC633Well we tried to go out to a nice dinner for my 40th birthday. But I just ended up bawling into my Baked Alaska after Justin called, crying and pleading for me to come home (he’s been having a rough time since starting chemo again). I’m not sure if I was mostly crying because Justin is always sick or because I can rarely get a break from it.

Or because I am forty.

But I think it was probably simply because I’m so busy being “strong” that I don’t actually cry ENOUGH.

In better news, it helps to know I may have played a small part in helping to make a difference. Since our Childhood Cancer Alliance stormed The Hill, several more reps have signed on to co-sponsor the STAR Act and a vote has been scheduled.

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Day 846 (cont’d)

F34143EB-9FB1-4D73-9FC3-01877B3BEF81Justin’s body continues to recover. His white blood cell is now up to a healthy 1,040, and he did not need any transfusions today.

He is doing well. He is doing really well.

His doctors restarted his chemo medications at fifty percent of his previous dose and Justin will be checked again in two weeks.

And. We are still on track to end treatment on March 25, 2019!

I hope this news encourages you, especially if you have been praying for us. God hears us. God loves us.

Stay with us to see what else God will do. Be blessed.

Be merciful to me, O God, be merciful to me, for in you my soul takes refuge; in the shadow of your wings I will take refuge, till the storms of destruction pass by. I cry out to God Most High, to God who fulfills his purpose for me. He will send from heaven and save me; he will put to shame him who tramples on me. Selah God will send out his steadfast love and his faithfulness! Psalm 57:1-3

 

 

Day 846

A7BEE618-4F9E-43EA-90A2-BA98EE53C0A2We are back in clinic, today, preparing to have an IV placed (hot packs help prepare the veins). Justin is smiling because he’s on several milligrams of Ativan, at my request. Being able to relax really helps veins to cooperate. Since all the trauma of the many failed needle sticks, Justin is just not able to stay calm on his own.

We are hoping and praying that his body is still moving past the chemo and virus-induced bone marrow suppression and producing proper amounts of blood cells as it should.

Thank you for following, supporting, praying.

In sacrifice and offering you have not delighted, but you have given me an open ear. Burnt offering and sin offering you have not required. Then I said, “Behold, I have come; in the scroll of the book it is written of me: I delight to do your will, O my God; your law is within my heart.”I have told the glad news of deliverance in the great congregation; behold, I have not restrained my lips, as you know, O Lord. I have not hidden your deliverance within my heart;
I have spoken of your faithfulness and your salvation; I have not concealed your steadfast love and your faithfulness from the great congregation. As for you, O Lord, you will not restrain your mercy from me; your steadfast love and your faithfulness will ever preserve me! For evils have encompassed me beyond number; my iniquities have overtaken me, and I cannot see; they are more than the hairs of my head; my heart fails me. Be pleased, O Lord, to deliver me! O Lord, make haste to help me! Let those be put to shame and disappointed altogether who seek to snatch away my life; let those be turned back and brought to dishonor who delight in my hurt! Let those be appalled because of their shame who say to me, “Aha, Aha!” But may all who seek you rejoice and be glad in you; may those who love your salvation
say continually, “Great is the Lord!” As for me, I am poor and needy, but the Lord takes thought for me. You are my help and my deliverer; do not delay, O my God!

 

Miracle (and I don’t just throw that word around)

We endured two needle sticks today but it was not as traumatic as it has been.

Bigger picture. Justin’s white blood count is up from 80 to 340 and his other counts are stable enough to forgo transfusions today. This means his bone marrow is functioning properly, and doing what it’s supposed to do!

Justin’s body is recovering! We are resting his veins until next Tuesday when he will be checked again. We cancelled the pic line placement since daily blood draws and IV placements are not necessary at this point.

A week ago, today, Justin was critically ill and three of the country’s top pediatric oncologists thought he was in full-blown cancer relapse.

Justin is not in relapse. Despite chemotherapy and virus, his body is fighting this thing off. He is getting better everyday.

If that isn’t a miracle, then I don’t know what is. And I’m not saying that just to hype this up. I can’t stand hype. It annoys me. 

I’m saying my kid was seriously ill a few days ago. Thousands  petitioned the Lord on his behalf. And now he isn’t seriously ill ANYMORE.

Okay I know you’re thinking it. I’m thinking it. Everyone here probably knows someone who was prayed for and NOT healed.

Does this mean we lack faith, didn’t pray hard enough or just aren’t good enough? No, I don’t think so at all.

My faith takes a regular beating as I watch my child suffer. Sometimes I forget or just plain don’t want to pray. And I’m certainly not good enough. Ask anyone who knows me.

I don’t know why God heals some and not others. No one knows why because no one knows the mind of God.

For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts. Isaiah 55:8-9

But I do know this. Whatever it is, God can and will purpose trials and loss for our ultimate good.

And, yes, I get it that it doesn’t feel that way at all. It’s NOT a feeling. It’s a belief. Of course, I didn’t want Justin to get cancer at all, for crying out loud! I don’t want him to be a life-long patient, regularly having his blood checked and dealing with harsh chemotherapy side effects.

But. Because I believe that even hardship is for our ultimate good, this helps when the negative feelings come. It really does.

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Day 840

My friends, we are headed back to clinic this morning.

Would you please pray specifically for a quick blood draw and IV placement? Justin does not have a pic line placed yet and the many needle sticks are causing him so much pain, bruising and fear.

Thank you. Deep breath. Here we go…

Day 839 – We Press On

The news is beginning to sink in.

Justin is not in relapse. He is still in remission. He will not have several more years of chemo. We do not need to start looking for a bone marrow donor match.

He has a virus. A stinkin’ virus.

It will be a tough few weeks until this is all resolved. But that is much, much better than a few more years.

I was never the alarmist, germophobic type mom. But I just ordered almost a hundred dollars worth of antibacterial wipes, spray and soap.

I know you can’t control these things. But me and my Amazon prime order are certainly going to put up a good fight against future viruses.

Today I am praying thanks, cleaning and pushing yogurt on Justin to help his stomach handle the siege of antibiotics.

Again, I thank you for unparalleled support and faithfulness to prayer. I will continue to update as we move forward in recovery.

95B98470-7596-4B21-BD76-8D8D40373910I write from our backyard, where I am soaking some sun into my vitamin D deficient, pasty, hospital pallor. I can see that my lilac bushes have bloomed again. And I can’t help but quote a friend who is now with Jesus.

“God is good. In all things. All the time.” ~Andrew Franklin

Results

 

For crying out loud, Justin has a virus!

Viruses in cancer patients can cause all sorts of problems, including bone marrow suppression (where blood cells are made).

I honestly did not think this would be the outcome. Apparently, Justin’s doctors didn’t either as they ordered the bone marrow aspiration before the blood tests for viruses.

Justin is not in leukemia relapse. He is just  very sick with a nasty virus.

Justin did not need a transfusion today! But his red blood cell count did drop a little so he may need one Wednesday when he is checked again.

He will also need to continue with antibiotics and intravenous immunoglobulin to treat immunodeficiency. I will be keeping him home in a bubble made of Lysol wipes and limiting visitors.

There is still a major issue with finding veins and IV placements. He endured three sticks today. Justin will have a pic line placed in his arm until he is fully recovered from the virus and bone marrow suppression.

I am extremely relieved, just also very exhausted from the emotional rollercoaster.

Our prayers have been heard and answered. Thank you for staying with us. GOD IS FAITHFUL.

 

 

Day 838

Justin was very sick to his stomach last night. I think it’s probably the switch from IV to oral antibiotics. I will talk to his doctor today about a possible alternative.

We are headed out to clinic for his bloods to be checked and possible transfusions.

I am feeling a little refreshed after two nights in my own bed. For whatever reason, I decided to clean out my closet last night. Maybe because it was a disaster area or maybe it was that need to control something thing.

Think I had clothes from the 80’s in there. Before you call the Hoarding: Buried Alive people on me, I am happy to say nine bags of give-aways or throw-aways are packed and ready to go.

Justin rested in bed among pretzel crumbs, while I sorted.

Distractions can be a good thing.

We read a devotional with the kids last night about Joseph. If ever there was an example of God using evil for good, it would be his life story. Sold out by his own brothers into slavery only to become a powerful ruler in Egypt, second only to Pharoah.

Not that I want Justin to rule Egypt. I’d just like him to not be sick anymore.

Thank you for continued prayer and support.

 

Cancer Mom Confessions

C29941B4-9AF5-46E7-8544-136B2AA6C434We are happily settled at home.

I went out to run errands, but mostly to get a minute to myself.

Mom left me chicken, pasta and salad for dinner. Bless her heart.

But I ate cocoa pebbles. Two bowls.

Thank you, again, for amazing support. Please stay with us, in prayer, as we continue with outpatient treatments.