These past few months have been very fun. We have visited museums, have done track, gone to a new school, and so much more. Please pray for my mom who has been very brave as she goes through this treatment. She had scans today to see if she has cancer anywhere else in her body and we all hope they are clear. I miss all my friends at home but it’s going to be hard to leave here. I’d like to make a shout out to mom’s cousin Angie for taking care of our cat, Donnie, while we’ve been gone. I hope to update again soon on my mom’s blog.

I can’t believe I’ve been out of the hospital for almost 2 weeks now. Things have been going well, even ahead of schedule. Less than a week into my daily outpatient hospital visits, they allowed me to have the weekend “off”, and currently I only go into the hospital on Mondays and Thursdays for infusions and to check-in with the MD/APN/PharmD to address any concerns. When I don’t go into the hospital, I have my own IV infusions at home. They are nothing like the dreaded backpack I had last summer. Instead, each day I have two inflated balls that I hook myself up to that slowly deflate over 4-5 hours. As, strange as that sounds, it is so much better than going into the hospital daily.

The goal right now, is to balance my medications, watch for graft-versus-host disease, stay hydrated and nourished, track my blood counts, and soon they will test my stem cells to see if the donor’s stem cells are kicking out my old ones and becoming the majority. I will also have a PET scan on Thursday to scan my body for any increased uptake of glucose which could indicate lymphoma growth. We do not have any reason to suspect it is back, it is just time for a new check.

I keep thinking Amber is going to get on here and tell you what’s been going on from the kids’ perspective, but things have been so busy that I guess there hasn’t been time. The girls love school! It has been a HUGE blessing. Right now they are at a Houston Astro’s vs. Oakland A’s baseball game with their school. They are involved in track after school and tomorrow I hope to see them run at a meet. They’ve made friends, had a sleepover, went out for a celebratory dinner for a friend’s First Communion – their classes are very small and they have really felt welcomed and special.  They’ve also enjoyed going to the beach in Galveston (and eating lots of seafood), joining a welcoming local family for their Easter celebration which included a lot of fun for the kids, and the 7 of us took an impromptu overnight trip to the Hill Country last weekend where the kids saw beautiful scenery, wildflowers, alpacas, jackrabbits, antelope, etc – It felt a little like a safari at one point. Once, again our friend’s aunt and uncle opened up their ranch home for us to stay the night. I’m starting to think that this is going to be a highlight of their life instead of “that scary time when Mom was sick and we had to go to Houston.”

That is definitely God’s blessing in this. The kids are so resilient and love the excitement of each day – even Harrison loves trying the new playgrounds around here, eating lunch with my parents, grocery shopping, running as fast as he can through the apartment complex, etc. My body has been stronger than what is typical. Yes, I’m very very fatigued, but I can exercise some, hang out with the family, enjoy good food, and generally stay mentally strong – although it is all overwhelming at times. I really believe the power of prayer is being seen through the day-to-day within our family. This could all be so much harder. Instead, we actually can see the privilege sometimes in going through this experience.

Thank you for your love and support! Please continue your prayers – especially for good results on the upcoming scan.

As of Tuesday afternoon, I am a free woman! I’m so thankful! After 3 weeks in a hospital room, you start to question how well you can hold it together before you completely crack.

While inpatient, I had such a wonderful team of medical professionals. The nurses were the most brilliant and compassionate I’ve ever seen. Of course, Jonathan kept them laughing with his dry-erase board drawings and writings. We also had fun making the bed go as high as it could possibly go – it goes really high. And a bonus that puts a big smile on my face is that I’ve kept my hair!!!

My sister came for a visit (she’s the reason the bed went sky high – she was helping me with some cosmetic eyebrow plucking). The kids also loved visiting the hospital. I ended up with blue exam gloves on my feet, and my 4 year old guest had the best time ordering “room service”. He thought the personal pizza was great (although he dumped a packet of salt on it when I turned my back) and loved the can of soft drink that he drank proudly wearing sunglasses.

I guess I prefer to be less clinical with this update. I’m on track with the engraftment of my donor’s cells, my white blood cells are up to the normal range, and the platelets / red blood cells are trending upward. Currently I have to go into the hospital daily for labs, a fluid/ magnesium infusion and visit with a nurse practitioner or MD. This takes about 3-5 hours per day.

Thank you for your many prayers! Jonathan and I feel that the prayers are what have helped me to progress so quickly – I think I’m a little ahead of the game (and I continue to have lofty goals). I often try to rationalize why I’m coasting through this pretty well, but my gut is that all of your prayers have strengthened my body and have guided my medical team each day.

I hope all of you have a beautiful, blessed Easter. It’s such a wonderful season of renewal! Thanks be to God for His gift of grace for all people everywhere through his Son, Jesus. He is Risen!

We’ve finally bought our photos from our February photo shoot – thank you Melanie G! – so, I’ll throw them in now and then to share with you.

Today is Day Four. Day Zero marks the day the cells were infused and then we count each day forward as we move into different phases of the process. Right now I’m in the weary, wanna-be-home, miss my bed, would love to be outdoors phase . . .  Actually, this phase right now is focused on treating side effects from the chemotherapy that I had for the several days before Day Zero. So, we are treating fevers & nausea, managing fluid needs, proactively using antibiotics/virals/fungals to avoid infection, repleting Magnesium and Potassium, taking anti-rejection medications, treating anemia with blood products, etc. I’m at a vulnerable point where my immunity has almost completely bottomed-out, so keeping me healthy is number one.

Engraftment of the stem cells may not happen for another week, give-or-take, and that’s when we hope to see the new stem cells start to do their job by producing red blood cells, white blood cells, & platelets. After those get going and I’m stable, then I can be released to the apartment for outpatient monitoring. The beginning of April is not an unreasonable goal. Please pray for endurance and strength for me, and for all of us. Sometimes it feels like I’m holding on to a shred of sanity – just unbelief this happening again, sleep deprivation from busy hospital nights / and needed treatments, and the open ended question of what’s ahead.

The kids are doing really well. They love school and return to class tomorrow from spring break. Amber is planning on blogging some about that, so I’ll let her tell you more. We are so thankful for the friends they’ve made, the supportive teachers and staff, and my parents who cart them all around town in Houston traffic. Thank you for reaching out to the kids and us in so many different ways. We value all of the love you have shown us.

God is always teaching us something and showing us His character. One of my weaknesses has always been lack of patience – I also like to control things. Every day I have to focus on just today, trust God that He’s who He says He is and believe that His plans are to prosper me and not to harm me. We can all take comfort in these promises:

We should begin the process in 15 minutes. Please pray for a smooth procedure, and for them to do their job. Thanks.

A Quick Update:

The process went very well. She as had some side-effects from a tremendous amount of medicine, and is sleeping now. Thank you for praying.

As a reminder, get on this registry. It takes 30 minutes to sign-up, 7 minutes to swab your cheeks and send the pre-paid envelope back, and if you get called to help – it doesn’t matter how many hours it takes. It could save someone’s life.

bethematch.org

As Arnold would say, “Do It NOWWWW! What are you waiting for??” I had to fix the quote. The chopper part is from earlier. I did need some sleep.

Tomorrow (Wednesday) will be Day Zero.  The donor cells are delayed and will be arriving this evening. Then they will undergo a few hours of processing before they can be given to me. So, tomorrow morning will be my transplant time.

There is a whole lot of coordination to get the donor’s schedule and my schedule meshed together just perfectly. I even learned yesterday that a volunteer hand-carries a little ice chest on their lap while they fly between the two locations. What an amazing system with so many giving volunteers on many different levels.

So . . . Today we patiently wait, and breathe, and relax, and trust in God’s timing.

Tuesday is the day. It’s just another day to so many out there. And really, it hasn’t hit me until right now that it’s a huge day for us in this almost two year battle. Tuesday, April receives the stem cells from the generous donor who doesn’t even know April. From what I’ve heard, it’s a gift that takes time, likely discomfort and even some recovery. These cells will finally do the job and see the lymphoma as a hidden enemy. Where April’s immunity has been “tricked,” the donor cells will attack.

We are very thankful. For the donor we hope to one day meet, for April’s parents who run the apartment while we’re both in the hospital, for my parents who will relieve them, for the girls’ school and our temporary church home – who reached out and welcomed us, for our church who shows us complete love and Christ-like care, for our family in Houston who helped with the move and transition, for the unexpected stay at our first home here and their help in the transition to the apartment, for more family and friends and more gifts and kind words and prayers, for our generous neighbors, for the doctors and nurses, and of course for our creator who gives us the strength to keep going and our knowledge that no matter what, our faith in Christ sustains us. Thank you everyone.

We’ve had some fun days since the 7 of us have reunited; Jonathan & I, the kids and my parents. Intermingled with my hospital appointments, have been many meals together (going out, eating in, grilling outside . . .), visits to fun attractions like a widescreen dinosaur movie at the natural history museum, walking around Rice University, playing games and even giving my parents a brief, but well-earned break.

Today I enter the hospital for my donor stem cell transplant. We will begin the conditioning period once I’m admitted and then I will actually receive the donor cells on March 17th. We had a good visit with my stem cell doctor yesterday, and we were given hope that this may be a cure for all of the undetectable lymphoma that is most likely in my body. While we haven’t asked percentages this time around, we know that we are at one of the best facilities in the world AND we have the Great Physician who can heal no matter what.

This time around has been so different from our experience last summer. I think last summer we (at least speaking for myself) were closed off from really connecting with other patients and didn’t really have the clearness-of-mind to really connect with the staff. We have met so many patients this time – many of them are in similar situations in regards to diagnosis, treatment, stage, uncertainty, concern for children – sometimes all of these

variables we have in common or just one thing, cancer, is our common ground. Very rarely did anyone “expect” it, even with a strong family history. Most have been shaken to their core, and so often there is beauty. Yes, beauty.  We have witnessed great faith and encouragement. Almost each person with the illness or the medical professional who works with it every day has had an awareness that many “civilians” haven’t experienced. There is a compassion that exudes and a clear “wake up” to our awesome God and the scripture that we blessedly have in our hands to help us walk through a trial like this. I have had medical professionals speak to me with such authority and reassurance that God is Good, He was not surprised by my diagnosis, He’s with me & and already ahead of me as I prepare for each upcoming step, because of his Grace I’m right with him (I could never be “good” enough on my own) and no matter what the future holds we win because of Jesus. I believe God has placed these people on my path to combat the negative thoughts that can suddenly take your breath away. I have no doubt that God uses you and me in whatever area of life we find ourselves in: sitting in a hospital waiting room, sharing a house with other patients, working within a hospital, waiting tables, working at the local school, working maintenance on the grounds of the apartment complex, driving the shuttle, healing the sick with the best technology and science . . . He loves us through His people.

Despite this being the hardest time so far in our lives, we have found more beauty and joy than we’ve ever known. We talked about that a little last night as we celebrated (a little early) for Jonathan’s 40th. Jonathan will be 40 on Sunday! I’ve known him for half his life! Little did he know what he was signing up for, but I’m glad he did.

One last thought. Our littlest is very anxious about being separated from me. I’ve tried to reassure him that He will be fine here at the apartment with my parents and his sisters, AND this time he will get to visit me in the family room of the SCT floor. This morning he told me, “God is going to be here with me. He loves me more than anyone here.”

I think I’ll repeat that to myself as well.

Hi, Elizabeth here. We’ve been here at Texas for a little less than a week, which has already been full of adventures. For instance, we got to visit my new school, walk 3 miles to a burger place and back, got new school uniforms, hung out with my reunited family, and noticed how warm TX is compared to TN. My mom’s going back to the hospital on Tuesday, so we will be needing loving prayers for good health. I will always have Philippians 4:13 in my heart.

It’s taken me longer than expected to get on here with an update. It has been super busy. That’s a blessing for keeping the mind distracted and all of the scurrying is good for my physical fitness. Here’s what’s been going on:

My brain MRI was completely clear! No evidence of my original disease and my brain itself is “unremarkable” – I take no offense to that. My full-body Lymphoma CT came back completely clear, except for the current area of treatment which was unable to be properly evaluated by CT. All of my heart, lung and lab work has looked good.  A final pre-admission PET ct will be done to screen my body for any unusually high activity, such as a tumor – that’s probably on next Monday.

We are so thankful for the great results which pave the way to my allogeneic stem cell transplant. My lymphoma doctor has decided not to treat my central nervous system based on the clear MRI and the fast pace we are moving toward the SCT – we don’t want to get any of the timing off – “we are running to catch the train.”

We’ve moved out of the church house and as of Saturday,  we are living in a three-bedroom apartment. It was completely unfurnished, so we’ve relied on Jonathan’s cousins, the church house ministry AND lots of IKEA shopping! You should’ve seen the huge order that was delivered AND the engineering (cousin, kids, us, grandparents – it’s a small factory) that’s been going on at our place. It’s turned out really well, and we will have some fun pieces to return home with. We are living on air mattresses – they make them much better than they used to, so no complaints so far.

I forgot to say – the kids arrived!  I’m happy to report my parents survived the two-day trip, and the children arrived with bounding energy. My parents had more of a far away look in their eyes – just kidding, but for some reason their energy was not as exuberant. There were lots of hugs and excitement for all 7 of us to be back together.

School will start soon. Still finalizing some things like uniforms, but the girls are excited for their Texas adventure! I like their attitude on making it something fun.

Next steps include two last radiation treatments, insertion of the CVC (IV in my chest), a light outpatient chemo day on Wednesday, then next week, a PET scan, check-up with SCT MD and then admission into the hospital on 3/10 for 3-4 weeks, with stem cell transplant day on 3/17.

All I know about my donor is that she’s a 43 year old female. I can write her anonymously (on both sides) for one year, then she chooses after one-year whether she reveals herself. Like I’ve said before, I’m so curious about who this is. I’ve even asked my mom if I have another sister out there.  She didn’t laugh…

This SCT will be different from before.  They will be giving me lighter chemo this time (there’s even a chance I’ll keep my hair!) – we’ve already abused my body enough, so we are dependent on my donor’s cells to step-in and take over my immunity and lead the way to fight of the remnants of this disease. Please pray fervently for this.

In addition to the donor’s cells being my cure, please pray for a smooth path to on-time admission to the hospital, a complication-free hospitalization, God’s guidance for my medical team, and faith & endurance for our entire family.

Thank you for your love, support and prayers  I couldn’t possibly feel any more loved.