How You Can Help Us and other FAQ

I planned on writing a blog about Carolina For The Kids and my incredible experience with UNC Dance Marathon, but that will have to wait. Life  was interrupted.

William the Conqueror is suffering greatly with complications after chemotherapy. I make it a point not to get too technical or graphic, but this month has been exceptionally difficult due to the aggressiveness of the medications and two infections he got while his immune system was destroyed. He is in great physical pain and we are emotionally weary. Our hospital stay will also be longer this month as we fight to regain strength.

I put forth a Facebook status with a prayer request and received an amazing amount of prayer, support and love. It also spurred many, MANY messages from those who love me with common questions and suggestions. I realize it may be helpful to address some of those questions now, because in my state of being exhausted, heartbroken to be away from William and physically sick, I just can’t address everyone individually. I tried, but finally my husband hid my phone.

A beloved family member who has experienced serious illness wisely told me, “You don’t chart your course in the middle of a storm. You chart in beforehand and then when the storm comes, you hold steady with all your might.” This post is so that I can answer you all without letting go of the helm.

Frequently Asked Questions:

Is William going to die?/Is this complication serious?/Are you scared?

Yes, William is going to die. So am I and so are you. It is unlikely that this battle will be the cause, but it is possible. That is why we are doing everything possible. Complications are the main cause of death during DS-AML, so this is serious. Dehydration and infections are the largest issues, but he is eating and drinking far beyond usual, meeting new milestones. He is a conqueror! Of course I am terrified. I am a mother. Let me say this once and over and over: The worst thing to come out of this is not that I would lose my child to cancer, for he would be with Jesus. The worst thing would be to not recognize Christ’s redemption and give him glory, or to not become more Godly through this trial.

Are the doctors listening to you?/Are they just prescribing antibiotics over and over?

I have NEVER seen such an amazing team. Just walking into the hospital on Saturday I saw one of the docs. She was headed to a funeral of a patient from years past that she learned had died. She cried as soon as we spoke. Yes, I want my son in these hands. They are very open to natural and various types of medicines and encourage all the natural skin treatments I have instead of steroids, etc. I plan on hiring the nurses as nannies when we leave. They come in just for dance parties and snuggles, cheering on every milestone and checking which bowties he is wearing. They see the whole patient and care for me as well. He is on antibiotics AND probiotics to protect him. They are preeeeeeetty good at what they do, being one of the top 10 in the world and all.

Do you use/want/need any essential oils?

I am aware of the popularity and purposes of essential oils and the myriad of health benefit claims, namely that Frankincense helps irradiate cancer. In fact, we use oils regularly, to include frank, thieves, peppermint, DiGeze, etc. etc. etc. Thanks to the frankincense, William and Baby Jesus smell the same. Boom.   It has helped tremendously and if you want to send oils, that would be fine. Reading additional information is NOT helpful to me right now. It feels like adding to a to do list that won’t get done, and that I am not doing enough for William despite best intentions.

Have you tried blood transfusions?

Yes. He has had 3 transfusions this week because his hemoglobin went below 8.1, and received platelets as well.

When Jason asked he offered to fly here and give him a transfusion. Wow. While unnecessary, offering your blood for another is powerful. Donating to your nearest bank saves lives. If you are able, I would.

Have I seen/watched/read about that HBO special “Killing Cancer”, the benefits of medical marijuana, and non-chemo related ideas for treatment?

Yes. William’s plan of treatment is 5/6 complete. His leukemia is specific and specialized, highly survivable and treatment is 95% successful because it is Down-Syndrome-Associated. Much of the information does not apply to us. I will be interested when we aren’t in emergency mode. These links, while interesting, are like throwing “How To Swim For Dummies” to a drowning person.

When can you be with William again? /When will he come home? /When will you be together as a family again?

I will trade out with my mom in the hospital when this RSV is out of my system, hopefully Wednesday. He will come home when his ANC reaches .5, his blood counts are trending upward and his system tests clear. We hope this will be before April. We usually get a week at home before starting the next round. Daddy and Big Brother can’t visit easily due to the flu precautions at the hospital which prevent kids under 12 from visiting.

HOW CAN I HELP?

1.Pray. Pray for us all the time. Have your mailman’s hairdresser’s cousin fourth removed from the dog’s side pray. It is like being surrounded by warriors on every side who are punching cancer in the throat.

You can recognize that there is nothing you can say… so DON’T say anything. Listen. Be still. It’s hard, I know. Just hug, send chocolate and trail mix, or tell me what an amazing job my man and sons are doing. Tell us how you are inspired or what Jesus is doing in your life. Tragedy happens. Sit, suffer and make a casserole. That is how you share our burdens. It makes me feel supported and loved.

2.Send me things that are funny! Laughter is good medicine! Things that are quick though, because reading is not in my realm of possibility right now beyond books I read to the boys.

3.(Gulp) You can donate to us at our gofundme link.http://www.gofundme.com/williamswarriors. We are very thankful for the Usborne book and Jamberry parties done in our honor.  This has helped with gas money, the medical and pharmacy expenses that are not covered, and items we will need after the chemo is over. There will be another year of recovery afterward, including an immediate move.

4.You can message me and tell me you are praying and that you love us. You can send pictures of your kids and videos for William. Most of all, understand that we are struggling. I am a fixer. If there is anything I can do, it is being done. Really. We can’t have enough cheerleaders.

5. You can take over ‘the back burner’. I need my fridge cleaned. My bathrooms are an abomination. When I come home, a month of work my amazing husband can’t do because he is working and raising out 3 year old is there. If you want to come and iron with me or take donations to the shelter, please do. Those things help me breathe. When we move out, I will take great joy in hiring a cleaning service to do it because someone paid for it already. 🙂

6. If you know us, you can encourage my husband and our family members. Tell our parents that they did a good job and thank them for not killing us. Encourage that man of mine and tell him what a great single-working-dad he is becoming in addition to being a soldier and cancer-Dad who loves Jesus. Show your kids William and let us be a teachable moment.

7. Offer something specific. It is easier to say yes to something specific that to come up with what we need, especially  when we need sleep or showers. Offering to bring a gift card or pizza on a specific night and then asking which time will usually get a yes. Look at what you can give or how you like to bless and offer. It is easier for all.

I love you all very, very much. You are a part of our story. Please don’t hear this as complaining. Just know we are at a weak point. We are not crushed, not abandoned. We are struck down but not destroyed. You are helping. You are important. You are NEEDED. Thank you for standing by us.

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One thought on “How You Can Help Us and other FAQ

  1. Yes, you can’t teach someone to swim while they are drowning. Maybe later, maybe not. But people need to realize that they aren’t the only ones trying to be helpful. Everyone thinks, “I know she asked us not to offer suggestions, but she didn’t really mean me.” Yes, yes she did. She did mean YOU. If she didn’t mean you – she would ask for your suggestions!!! I know because sometimes you ask me and sometimes, I have to learn to just LISTEN. I’m trying to help from afar and love your guts, crushin’ on your pancreas, pretty mama.

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