Things are moving quickly

Being sick has its benefits
Being sick has its benefits

We are picking up speed here. I’ve completed 7 of 16 radiation treatments, my stem cell donor has been screened and approved, and my calendar is filling up with lots of tests: MRI, CTs, PETs, EKG, echocardiogram, pulmonary function tests, labwork, etc.

Today I will have an MRI to see if I should have intrathecal chemo (it is inserted like an epidural during labor and delivery) and would treat any lymphoma that is lurking in my central nervous system (which normally chemo doesn’t reach because of the blood/brain barrier). Please pray for wisdom for the radiologist and my lymphoma team to know what is best for me.

We haven’t had any luck with medical housing for our large family, but we think we are narrowing down on a 3 bedroom apartment near the medical center that can be furnished with a rental package. We are estimating that we will be here until mid-June. We are looking forward to being IMG_5971reunited with our kids and my parents, and things are finally coming together so that we can move forward with that.

There are many important medical dates approaching, but the most important are my admission into the hospital on March 10th and the actual stem cell infusion will be on March 17 or 18th. I am so thankful for a perfect match donor who is willing to do this for me despite me being a complete stranger – I do have to say I’m really curious about who this is. It’s amazing to me that we have more stem cell criteria in common than my own sister. I’ve heard from another patient that I can learn who the person is in 2 years.

Please be in prayer about this procedure. It comes with short-term and long-term risks, but the possible benefit of a new immune system that will fight the lymphoma in my body weighs more heavily than allowing this cancer to possibly pop-up in different areas of my body with my broken immune system.

We feel overwhelmed, of course, by all of this, but at the same time we feel blessed. I’m grateful to have treatments available, insurance that has approved my treatments, an unknown donor who is willing to help me, a husband who can work from anywhere, a family that would do absolutely anything that is needed, a school and church here in town that is reaching out to us in addition to our own church family back home, a beautiful and quiet home that has been opened up to us for these last couple of weeks while we get our feet on the ground, and all of you who are praying for us and giving us encouraging words. AND did I mention that we have a loving Heavenly Father who is holding us in His hands, Jesus who has given us a beautiful eternity to look forward to and the Holy Spirit who fills us with inexplicable peace when the anxiety starts to well up? God is good. All of the time. We must trust Him even when we don’t like our circumstances. So, day-by-day we must make a choice to hand it over to Him. Easier said than done, but we are a work in progress. 🙂

Please consider being a stem cell donor. It is a very simple process. Go to bethematch.org, they will mail you a swab for your mouth, and you mail it back. Please help me to pay it forward.

Quick Update

Just wanted to jump on here quickly with a few updates. We received the bone marrow biopsy report today and it is clear! Also, we have school lined up for the girls with a generous scholarship. Our girls have always attended public school and this will be a wonderful new experience for them to go to a private Christian school with skyscrapers as their backdrop. These are both answers to prayer.

I have completed 4 of 16 radiation treatments, and so far it is going very smoothly. I will have doctors’ appointments coming up next week to discuss the donor stem cell transplant (my donor is currently being screened) and possible chemo/additional radiation treatments to kill any hiding lymphoma cells in my central nervous system – these will be unlike anything I’ve had before. Again, the goal is to systemically eradicate all of the lymphoma, so that a cure is possible.

Thank you again for your prayers. Housing is still wide open, but we trust that something will fall into place soon. Once that is lined up, our family will join us. Until then, we are enjoying our beautiful living quarters at Mercy House and even had a laughter-filled evening last night with the other house guests.

Below are a few of pictures from Maggie Valley, NC in January. We seized the moment – and headed for the mountains. Yes, protective mother here made everyone wear a bike helmet. 🙂

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Coming Up with a Plan

melaniegphotography.com

The beginning of last week started with the disappointing biopsy results which put us immediately into business mode. We had to pack, explain the basics to our kids, get our parents/brothers/sisters notified (then my parents had to prepare, pack and head to our house), get MD appointments set-up, start the housing process – and I desperately wanted family photos. We’ve never been good about getting professional pictures, and this time I was determined. As silly as it may sound, I really wanted some pictures while I still have a little hair. Thankfully, the afternoon before we left, Melanie G. came over with her fun and relaxing personality to capture some moments around our house. Above is the only image I have so far, but many are to come!

Thursday was spent driving after long goodbyes to our kids as they one-by-one left for school. Then it was goodbye to my parents before we drove 13 hours (and we barely stopped) – phew! We have truly been blessed with a beautiful, free condo to stay in sponsored by a local family and their church. This condo is shared with other patients, and it is wonderful now, but won’t work long term as our children join us.

As I mentioned before, we want our whole family together this time. So, we have calls out to several places, churches, friends of friends, etc. We have a tall order: a place not too far from the hospital, with good schools and can accommodate up to 7 of us – we need family with us to help with childcare. We are good at making a small place work, but it is still a lot to ask for. It is something we are praying about, and I believe God will unfold something at just the right time.

Last Friday, I had blood work done, a bone marrow biopsy that I will not describe (I loathe them), and a good, thorough visit with my Lymphoma doctor.  Once the test results are in and I’m discussed at their team “Difficult Cases” meeting, we should have a plan nailed down pretty well. Right now there are some variables that must be considered.

Jonathan continues to run his business. I think at this point, he could work on his laptop and make phone calls while jogging on a treadmill, nauseated, upside-down in outer space. He’s amazing.

We have an appointment with my beloved radiation oncologist in 45 minutes to do a radiation simulation – scanning, calculating, evaluating best techniques, machines, doses, etc. She says she can melt this fast growing mass. With Lymphoma, it is systemic, so we must treat the long-term as well to destroy the cells that hide and wait to rebuild their mass.

Please pray for us. I’m really at a point where I’m unsure what prayer to ask you to pray. God knows my longing to raise our three beautiful children and to let me be Jonathan’s wife. Of course, I see that as complete healing and living our days out normally into old age. However, I know God’s ways are not our ways and His thoughts are not our thoughts.

Please pray for God’s guidance for us, our physicians, our family who tirelessly cares for our kids and home. Help us be lights for Jesus – even on the days we feel like curling up in a ball. Please pray for our family being reunited at just the right time, at the right schools with the right housing.

Thank you for your comments, texts, emails, etc. Your encouraging words mean so much to us. It is comforting to know that others are praying. This post may sound really depressing – let me ease your concern a little. Jonathan and I date really well. We have enjoyed long walks around Rice University, spending time at the shops and restaurants in Rice Village; we rarely run out of conversation, and sometimes I wonder if others would be baffled to see us laughing with our odd, but united sense of humor.

God is good. And He will see us through.

 

Biopsy Results

Well, the news is not unexpected but it’s not what we hoped and prayed for.  The breast biopsy has come back positive for large b cell lymphoma – which is the same aggressive lymphoma that was around my right eye and forehead area.  We will have to return to Houston this week.

My ever-dedicated radiation oncologist called me last night to give us the results and a rough idea of the plan. My lymphoma team will meet Wednesday at noon to put their heads together on the definitive best course of action.

I will definitely have an allogeneic stem cell transplant (this is the donor type, and thankfully I have a 10/10 match available). The question will be whether I will have chemotherapy only, chemo and radiation, or radiation alone prior to the transplant.

Despite this being un-welcomed news, we are at least grateful that the mass is in a new area (my head is completely clear!), so I have more options for treatment.

We will discuss all of this with our children this afternoon (we didn’t want to throw it on them this morning), and then prepare to return to Houston.  This time we plan to take the children. We need to figure out schooling, housing, etc.  4 months apart last time, was just too much, and I think we are still seeing some of the effects of that separation.

Please pray for wisdom & guidance for my incredible lymphoma team at MD Anderson, our family as we prepare for an upheaval of our normal life for several months, our support from family and friends – we all need renewed energy and endurance.

We will not let this shake our faith. We are disappointed and prayed this would not be our next step, but we will choose to trust God with each day.

11 But let all who take refuge in you rejoice;
    let them sing joyful praises forever.
Spread your protection over them,
    that all who love your name may be filled with joy.
12 For you bless the godly, O Lord;
    you surround them with your shield of love.

Psalms 5:11-12

 

Not Much More Info. Yet

We flew back from Houston this morning without any results or next steps. We promised the kids that it would only be a 3 night trip and I believe it is good for us to be together.

Yesterday was a full day. I spent a few hours in MD Anderson’s breast center. I met some of the best doctors who compassionately and thoroughly took many ultrasound images of my right breast and went directly into a biopsy procedure which took about 4 samples. We ended with more mammogram pictures, and I was told that results usually come back in 3-5 days and that my lymphoma team would be notified.

We are amazingly happy and thankful that the PET scan on Wednesday showed a completely clear right eye area and forehead – that had been our big fear for reoccurrence. This breast thing has come completely out of the blue. In fact, I had just had my annual visit with my GYN and had a clear mammogram on 12-17-14. The nature of this aggressive growth is unbelevable.

Please continue to pray that it is some sort of benign mass, and that the radiologist, pathologist and my lymphoma team will know how to proceed.

I met with my stem cell doctor and my radiation oncologist during this trip, and they are ready to design a treatment plan if necessary. Of course, our prayer and desire is for complete health and as little impact on our family if some sort of treatment is needed.

Please pray for our energy level and that we stay optimistic and not weary. As you can imagine, it just seems like too much as we were just coming out of the fog. . .

One of my favorite songs from last summer:

Update from Houston

Jonathan here.

We have some mixed news after this morning’s PETct. The original area around April’s eye is completely clear, which is a huge relief. The surprise is that the scan shows activity in her right breast. This could be something harmless, or the lymphoma may have found a new location.

We will know much more tomorrow with an ultrasound and a biopsy – starting at 8. We also have an appointment with the stem cell doctor. Please pray that it is not cancer, and for the doctor’s wisdom. Thank you.

PET Scan on January 28th

It is truly amazing how quickly the weeks fly by. On the 28th, I’ll have my 6th month scan – 6 months will mark the day I had my stem cell transplant, July 31st. Of course, I like to think of it as my 7-month scan, because I had my first clear scan during radiation in June, and every month counts!

Thankfully, the holidays have really helped with keeping me distracted and busy, and that means negative thoughts are easier to keep out of my head. Jonathan and I celebrated 17 years of marriage on December 13th, our family of 5 had a joy-filled, thankful Christmas, and 2014 was happily said goodbye to with a light and fun celebration with my sister and her family. Although there is much to be thankful for in 2014, we, understandably, are looking forward to this new year.

I ask for your continued prayers as Jonathan and I head back to Houston in a couple of weeks. Please pray for safe travels, cancer-free scans and wisdom for my physicians (I’ll see my radiation oncologist & stem cell doctor on this trip).

As we move into this fresh, new, year, Jonathan’s and my goal is to live purposefully in the moment – less thinking about what’s next & what has already been. I pray the same thing for your family. We live in a really distracted world and each of us has only a precious number of days on this side of eternity. If you want to open your eyes a little to the value of a day, even a moment, take a few minutes to read Ann Voskamp’s blog post. It has inspired me, and Jonathan as well. It even makes this always-suburb-living girl crave a Canadian farm . . .  🙂

Thank you for your prayers.  Happy 2015!

A few Christmas photos:

examining the remnants of Santa's visit - notice the safety goggles
examining the remnants of Santa’s visit – notice the safety goggles
Christmas Eve super short hair, but so happy to have some :)
Christmas Eve – super short hair, but so happy to have some 🙂
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Opryland Hotel
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Real boys wear pink aprons.
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Making Swedish coffee bread
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Our creations. Jonathan created an outhouse.
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17 years!

New Favorite Song ~

The Adventure of Muscle Man

FullSizeRenderYou know that life is back to its normal routine when you are hounded again and again to please clean the aquatic frogs’ water tank. It really isn’t a priority of mine, so I find it easy to let it slide. Finally, our eldest child left a post-it note in the kitchen yesterday that was a clear reminder. It read, “FROGS: Do or (they) Die.” I finally decided to carry their small tank down to the laundry room and I placed it in the utility sink while a jug of spring water (that I brought in from the garage) warmed up to room temperature. Ridiculous . . . spring water for frogs, room temperature, yucky green stuff growing on the sides of the tank, etc.

After Skipper and Muscle Man sat in the sink all day long, our eldest asked if I had cleaned their tank. No I hadn’t, but I was determined to finally get it over with. I donned the long, pink rubber gloves, got the frog net down from the shelf, and poured a cup of temperature-appropriate spring water into our biggest coffee mug. Scooping the frogs out of their tank always makes me nervous. One has hopped out before and I did not prove to be a bold lover of amphibians – instead I quickly thought of ways to contain, without touching it. Thankfully, Jonathan was nearby to retrieve it.

IMG_0551Sure enough, yesterday as I scooped Muscle Man from the tank, and I tried to rapidly flip the net over to dump him into the large mug, he made a run (leap) for it. He went right onto the recessed drain grate. Oh, no. I was predictably afraid to touch him and Jonathan was not home to help. I’m pretty positive if I had asked the girls, they would have only screamed and our 4-year-old boy would have probably been happy to grab it, but he’d probably kill Muscle Man at the same time with his chubby toddler hands.

As I said, “Oh no. Oh no. Oh no,” in disbelief, our middle child appeared in the doorway to witness Muscle Man’s whereabouts. He’s an aquatic frog and we were pretty sure the clock was ticking on his ability to survive outside the water.

There wasn’t any way he could squeeze into the drain, right? The holes were tiny and he’s pretty plump. Oh, no. He began eyeing (according to my interpretation of frog body language) the tiny holes and was looking like he might try to contort his body to go down the drain. We watched in horror. I declared I was going to get a knife. That upset Elizabeth. I didn’t have time to explain that it would be a plastic, disposable knife to try and wedge him out. As I returned to save Muscle Man, he squished himself down flat and disappeared into the depths.

Oh. No. Elizabeth was upset, but quickly tried to say it was okay. Then we headed upstairs to tell our faithful frog keeper that the cleaning of the tank had failed miserably. The reaction was much worse than I would have expected. I was helpless. I couldn’t believe the distress, and our little boy kept trying to understand what in the world was going on by asking all sorts of non-stop questions. I’m pretty sure our eldest then turned to texting/email/instagram or something to declare the tragedy because the iPad appeared almost immediately.

I heard Jonathan opening the garage door. I ran downstairs to offset any fear that he might begin to have as he entered our house that was full of crying, confusion and chaos. As the man of the house, he went directly to the sink to fix the problem. In the meanwhile, he and I tried to keep the kids’ expectation realistic and told them that the frog might very well make it to river and could live a very happy life there. ( I was pretty sure he’d get strained at the water treatment plant, but I really didn’t know, so we might as well be optimistic).

FullSizeRender 2Jonathan cleared out the cabinet under the sink, considerately placed towels under the pipe, and proceeded to unscrew the u-shaped tube. Once it was opened he turned the tube upside down, and there he was – Muscle Man was alive!!! It was time to stop the wailing, the mass communication, and the confused 4-year-old questions of the frog’s fate, etc. He’d been rescued and was reunited with Skipper. I ran to the kids and told them, very relieved (and growing tired), “Muscle Man is back from the dead! Your dad is a hero!”

That’s what happens in our house. There isn’t much time to recuperate, meditate and ponder here, but maybe that’s a good thing. It means less time to worry about the future. We are forced to live in the moment. I’m trying to be thankful to have these crazy moments.

Despite the hysteria of last night, we did have a relaxing Thanksgiving break. The kids were out of school for a week, and we ventured 500 miles north to spend the holiday with Jonathan’s parents. It was the strongest I had felt since all of this medical stuff started – I actually felt a little like myself. We had a couple dustings of snow, Jonathan’s mom cooked delicious homemade meals, we had good nights’ sleep, watched some movies and even went around the table and said all the stuff we are thankful for – and there is so so much. Our awareness of our blessings is even more pronounced this year. It is a blessing in itself just to be here for another holiday season.

I still continue to struggle with side effects of my treatments and numerous medications. The ever-dripping eye, occasional aches in my forehead, the missing eyebrows, eyelashes, receded hairline . . ., and the new numbness/pain in my hands and forearms – hopefully temporary. Please pray for me to have patience with these things, and for them to resolve. Please also pray for our continued physical refreshing and mental/emotional recovery. And of course, that the cancer stays away for good.

Night Wakings

imageOnce again, I was thinking what in the world do I have to write about. My life lately has resumed to pretty much the normal routine for most stay-at-home moms (and I’m grateful for that privilege). I guess one thing out of the ordinary was my visit to the Vanderbilt cardiologist. I may have my numbers off, but I’m pretty sure that his nurse practitioner said that out of 20 cardiologists only 2 have a special interest/education in oncology. Thankfully, while I was inpatient at Vanderbilt in the spring, one of the two were rotating, and I was able to establish a relationship with him.  When I met him last week, he had just returned from a few days at MD Anderson and he personally knows my cardiologist there.

In general, my heart has been very healthy which has probably benefited me during my treatments. One concern I had was that my CT in October showed that my left subclavian vein has high grade stenosis and occlusion (narrowing). The cause is from my left arm PICC line that delivered the toxic chemotherapy into my body last spring. As I learned this week, a vein behaving this way is nothing compared to an artery doing that. There are several veins that can return my blood from my left arm to my heart, so if that one’s a little slow, others can do the job. It sounded ominous to me in the CT report, but the expert has allayed my concern. My appointment went well, and I will be monitored from here on out for any cardiac side effects from my chemotherapy treatments.

Saturday night I woke up around 3:30 am. Sometimes my anxieties can wake me up and I just lose valuable sleep, but other times I think they are quiet, intimate times with God. Saturday night my awakening involved a clear realization that this life is short. Really really short. The Bible verse, “The grass withers, the flower fades, but the word of our God will stand forever.” (Isaiah 40:8) kept going through my head.

I got out of bed and walked around the house, I even went to the girls’ room and rearranged their blankets on their ever-growing, pre-teen bodies and gave them kisses. (Our little boy was at my parents – but I did peek into his room and saw the glider where we read him books and noticed his wooden train set.) I had the realization that this will be brief. What will we do with this time?

I told Jonathan about my insomnia on Sunday morning as we had a cup of coffee before the girls woke up. He said that it sounded a lot like his 1 am waking last Tuesday. He had the same strong urge to live differently, that this time will go quickly.

Earlier in the week we had discussed what our hopes are for the kids, all the academic and social pressures they are under and questioned if we are doing it right. Is our goal as parents to live in the suburbs, go to the best public schools, so that our kids can get into the college of their choice, then marry and raise their kids in the suburbs, go to the best public schools, so they can get into the college of their choice, then marry and raise their kids in the suburbs . . .?

Jonathan and I agree, whatever minor or major change we are to make, it must be made prayerfully AND with a one-year waiting period. We know our emotions are raw right now, and we shouldn’t hurriedly pack up and move to a 3rd world country. It’s just a growing awareness in us to step aside from the ordinary, all of the good distractions, and see how we can utilize our time best.

I don’t have any answers to share. I don’t know if whatever our change is will be visible to others. But, I do know that we are all in the same boat. We can live our lives unaware of the finite number of breaths we have and purely seek the comfortable in life, or we can try our best to be alert, seek God’s calling in our life and dare to live dangerously.

Step-by-Step

Little by little we are adjusting to our life “after the fact”. Today the step forward was attending church. I wasn’t sure if I was really ready, but I decided to  give it a shot. In order to ease in, I went a little late and left a little early. I sat in the back row and just took in the atmosphere and soaked in the message. It feels good to have accomplished that hurdle and to have immersed myself in corporate worship.

This week we caught up with one of my Nashville oncologists. We (Jonathan and I) shared our good CT results with him and had some labs checked to see if my counts are improving. I’m still anemic and my white blood cells dropped yet again, so I will continue to take extra precautions to avoid germs – thankfully, it isn’t flu and cold season quite yet.

A friend of mine shared a devotion with me several weeks ago. It took me a little time to actually read it, but it really spoke to my heart. It was written by Kara Tippetts in Colorado Springs. She is a thirty-something wife, and mother of 4 (all between the ages of 4 and 12) who has been diagnosed with terminal breast cancer. Her words are inspiring, and heartbreaking. Through our experience, I can so easily see how her story can be the reality of any parent out-of-the-blue. She and her husband have been very brave in their willingness to share their story. I have started following her (which ironically, I don’t follow blogs) 🙂 at mundanefaithfulness.com. I’m sure that their family would appreciate your prayers, and I know her writings will be a blessing for you to read.

Please continue to keep us in your prayers. We still feel like we are limping in to the normal routines of life. Please pray for our continued reliance on God, a complete cure for me and an ever-present awareness of living in the moment.