When "Thank You" Is Too Small

What do you say when "thank you" is too small?

This passed week our house has been blessed by generous, selfless people. It started with a community group from WACC (Whittier Area Community Church) asking me "What do you need?" Knowing that the simpler needs were being filled I threw out the desire for us to have new floors in the boys' room and playroom. To my pleasant surprise, this group said "We want to do that for you."

Whaaaaaaat???????

I was shocked.

Then came the planning. Crunch time happened fast because the doctors were talking about discharging Dempsey by Wednesday and this lovely group had just started.

We figured we were safe because my parent's house was an optional place for us to land for a few days while the floors were being done. Not only would it be a good place while the floors were in process but Serve Weekend (via WACC) had Kenagyville as a project that would be in full swing today.

God worked it all out. He has us remain in the hospital. The floors were finished last night with Tim coming back this morning morning to put the bunk beds back together and add felt to their feet. Serve Weekend descended upon Kenagyville around 10am this morning and finished a little after 3pm, I believe.

Y'all... stop and process this with me a minute. People, who are not related to us, gave of their time, energy, skills, resources to help us out. We didn't even ask them. They asked us! Then, when we gave them a HUGE goal they stepped up, worked together, and made it happen. On top of the flooring angels Serve Weekend asked what they could do to serve us and between our wish list, my best friend delegating, the project leader leading, and the volunteers burning through tons of elbow grease our house is IMMACULATE. There is just no word big enough to contain or explain the thankfulness, gratitude, humility, honor, happiness, blessings, joy that we feel.

Serve Weekend angels had their work cut out for them! They organized our garage, sprayed weeds, laid weed guard, planted tomato and zucchini plants, laid wood chips in the front and back planters, steam cleaned our carpet, put the boys' furniture and toys back in the rooms, washed curtains, washed/ cleaned kitchen and master bathroom. All that at no cost to us. My eyes are welling up with tears of joy just thinking about all of this.

The Lord has totally used His Body to show his love and support for us. HE IS WITH US. He is for us. He cares about us. These lovely people had nothing to gain by helping us in this way and they helped anyway. These people showed us love by helping us and sacrificing their valuable time and energy. Hard to find words to accurately convey thanks for that.

I sit here thinking: My baby is in the hospital and life as we know it has been turned upside down. While we are struggling to catch our breath and find our leukemia journey stride, our brothers and sisters in Christ are praying for us, serving us, supporting us. Many people from all areas of our life have banded together to lift us up, carry us through, and cheer us on. This place we are in is incredible. Indescribable. It's hard and scary but there is beauty in it. There is love, joy, peace, presence, friendship, support, faith, generosity, service, selflessness, thoughtfulness, intention, and a myriad of other wonderful words.

Truth: I am still scared. Despite the beauty, I'm still scared. I have fears. I worry. I also pray. I am also quickly learning to acknowledge m limits, respect them, and lean into people I have never had to trust before. It's hard. It's painful. It's also oddly refreshing- that there are people who can pick up where we leave off so the story continues, unhindered.

Pics: see the previous post for photos of what angels did to Kenagyville.

So, with these too-small words of gratitude I (we) say "THANK YOU!!

Saturday Pics

Pics of Sawyer in Yucaipa

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Terminology

Here are some terms that are helpful to know while you're following us on this journey through leukemia. I hope this helps clear some things up.

• ANC = Absolute Neutrophil Count
  Neutrophils are the type of white blood cell that fights infection. You have many types of white blood cells, so when you hear white blood cell count it can be misleading. The normal range of neutrophils is 1.5-8 (1500-8000).
  Dempsey's level is currently 0.
  Pray that his ANC level increases and maintains.
• Hemoglobin = the protein molecule in red blood cells that carries oxygen from the lungs to the body's tissues and returns carbon dioxide from the tissues back to the lungs.
  Normal range is 12-17.5.
  Dempsey's level is currently 11.1. 7.8 yesterday before transfusion)
  Pray that his body holds on to the red blood cells and he maintains a healthy level.
• Platelets = the clotting factor in red blood cells
  When your platelet levels are low your red blood cells tend to burst. When this happens you begin to see what looks like a rash of pin dot size red spots. This is not a rash, it's called petechiae. THIS is what I saw on Dempsey and attributed to an allergic reaction to cefepime (antibiotic). It was a result of his platelet levels being dangerously low and his red blood cells bursting. Scary stuff when you think about it.
  Normal range is 150,000-300,000.
  Dempsey's level is currently 73. (16 yesterday BEFORE transfusion)
  Pray that the infusions he receives are all accepted by his body and that his platelet levels will remain stable.
• Vitals = checking his blood pressure (bp), temperature, breaths per minute.
  They check these more frequently if certain levels are lower, he's receiving a transfusion, there's a fever...
• "Meds" = all the oral medicines Dempsey has to take
  There are fewer now than when we arrived at CHOC. Praise God.
  Pray that Dempsey accepts these meds and doesn't ever fight us on taking them. Pray also that he will be open to learning how to swallow pills because he will be taking A LOT of them over the next 3.25 years.
• "Tubies" = the plastic tubes attached to his port/ line
  They use these to administer medicine, draw blood. We are thankful this port is two-way.
  Pray against complications with these. Pray that each night he sleeps with them there is no problem or entanglement. He has not had any issue with these thus far. Praise God.
• Portacath or port = the site inside his body that the line pokes into to administer meds and draw blood. A catheter connects the port to a major vein.
  Pray against infection and complication. Pray against pain. Pray for selective amnesia- that he will forget all of these pokes.
• Dressing = adhesive/ covering over port/ line site.
  Pray against pain of removal. Pray against infection.
• In/Out patient = In-patient means staying in the hospital; Out-patient means staying at home but coming to hospital or clinic for parts of treatment
• Pre B Cell Acute Lymphoblastic Leukemia = Dempsey's form of leukemia (cancer of the blood)
  This is a fast growing cancer that starts in the B cells. 80-85% of children will ALL have this specific type. It's the most common and has the highest "cure" rate.
  Pray for miraculous healing. Pray against complications. Pray for miracles along the way. Pray for defying medical odds in positive ways that pleasantly surprise the doctors.
• Chemotherapy (phases of treatment); drugs that kill cancer cells (and also healthy cells)
  Induction = first phase of treatment, typically the first month
  This is phase where the goal is to induce remission. This phase is said to be the hardest because of the emotional and physical roller coasters you experience- diagnosis, pokes/ prods, procedures, starting treatment.
  Consolidation = second phase of treatment, months 2-3
  This is more intense than induction.
  Maintenance = third phase of treatment, month 4 through end of treatment
  This is the phase that begins once the leukemia remains in remission after induction and consolidation phases.
  Pray against complications. Pray for PERFECT results. Pray against negative side effects. Pray for miracles at each stage.
• Remission = means there are no more leukemia cells found in the bone marrow
  Pray for remission to come swiftly and completely.
• Bone marrow biopsy = where they suck out a small amount of marrow and send it to a lab for analysis
  There is discomfort with this procedure- they went throught the bone!
  Pray against pain. Pray against complication. Pray for courage. Pray the doctors have steady hands. Pray for perfect results.
• Lumbar puncture = a needle inserted into the spinal canal to collect cerebral spinal fluid (CSF) and send to lab for analysis
  There can be discomfort from this procedure. Thankfully Dempsey is sedated and can spend the recommended 30+ mnutes of laying flat coming out of anesthesia.
  Pray against pain. Pray against complications. Pray for courage. Pray the doctors have steady hands. Pray for PERFECT results.
• Moon face = swollen, round face that comes as a side effect of steroids used during treatment
  According to the nutritionist, this is often intensified by a poor diet or one high in sodium and fat.
  Pray that we will continue to feed Dempsey healthy foods and that this side effect isn't present. It's not an awful thing, we just want him to look like our baby always.
• The Team = all the doctors/ professionals that are in charge of Dempsey's case
  Oncology, Infection Disease, Physchology, etc
  Pray for this team. Pray for their hearts. Pray for their minds. Pray that they are seeing EVERY detail and making the BEST decisions/ plans for Dempsey.
• Child Life = pediatric healthcare professionals who help children and families cope with challenges and experiences of hospitalizations, illness, and disability.
  These gals (only met women so far) have been amazing. What a support. I think they've done more good for me personally than for Dempsey. Dempsey sure does like them. He especially likes their iPads because he gets to watch and play on them as a form of distraction from scary or painful procedures. Tech is BIG with these professionals.
  Pray over this department and the professionals. Pray for their hearts. Pray that they are always equipped to handle what each patient brings to them each day. They are fabulous and that job has to be hard- emotionally.
• Turtle Talk = fun, engaging digital interactive show that happens two times a day for the kiddos and guests.
• Playroom = where kiddos can go to play, of course.
  There are video game systems, crafts, toys, air hockey table, art stuff, play-doh, etc. That's where Dempsey got to meet Minnie Mouse.

If you've read a term on the blog that isn't covered here and you want to know how it impacts our journey, please go to the Got Questions? post and fill out the form. I will try to answer or explain.

So Brave and Adaptable

It is the absolute WORST to watch your baby wailing in pain! So, remember that photo where I showed you his port and line (view post here)? Well, the external portion gets changed every 7 days (as long as he in inpatient).

Today is the second change out.

That means removing the dressing- PAINFUL. Our poor little guy had tears streaming down his cheek, yelling that it hurt, asking for permission to cry. He yelled at me when I tried to offer some breathing assistance. I yelled back. Why? Because no child of mine gets to disrespect me like that when I am trying to help. I told him "You can totally be upset, angry, frustrated, but you do not get to speak to me like that." He quickly explained himself and adjusted his tone toward me. Precious boy.

That was actually the easy part.

Two nurses and a Child Life person came in to put in the new line. Oh. My. God. This mama's heart was undone. Seriously had the thought of murdering those lovely ladies who were hurting my baby. Not a good emotional place at all.

To hear Dempsey shriek in pain, more than once... to hear him beg them to stop... to hear him say "I'm not brave"... to watch him try so hard to keep playing a game on the ipad as if his fingers knew his mind needed to be as distracted as possible... all these things are just too much.

And yet...

He has recovered physically already. Mere moments later he was okay again. I'm sure his emotional recovery is gonna take some time. I am waiting for him to blurt out something related to that procedure while playing wii or doing something totally unrelated. This is a little bit of how he processes.

Y'all... this mama needs prayer. Pray that God will calm my emotions and help me to dig deep into the reality that Dempsey needs this to get better. Most days I can manage this thought process quite well. Today is not one of those days. I haven't broken down and I don't think I will... but I am still very raw, exposed even, emotionally.

Prayer requests:

• Pain relief for Dempsey and no pain in the future
• Increased pain tolerance
• No infection
• No fevers
• Excellent blood levels
• High spirits
• Laughter
• Restful sleep
• No fear
• Courage, bravery
• Trust
• Acceptance
• Emotional/ mental/ spiritual/ physical protection
• Appropriate amnesia (so he doesn't remember the bad stuff)
• Perfect results- ALWAYS
• Protection over me and Jake- all facets of life
• Protection over Sawyer and my parents as they adventure

Got Questions?

Life in 2D