Just a quick update from the road.  My lymphoma specialist saw me yesterday and determined that the RICE chemo isn’t working. So, we are moving on to radiation. She gave me full encouragement that remission can be fully achieved through this method as well. A stem cell transplant will follow.

MD Anderson is amazing. Within 30 minutes of emailing my lymphoma radiation oncologist in Houston, she wrote back with her plan.  We will see her tomorrow at 1 pm central time. It will take a few days for all the steps, but radiation therapy will begin next week. It is expected to be 3-4 weeks of treatment.

I will post with updates. Please pray for success.  My heart feels lighter and more hopeful than it’s felt for months.  I’m going for the cure!

Get your earbuds or headphones and turn this up.  Such a great song about the hope Jesus gives each of us – the core of what all Christians believe.

Please continue to pray for the effectiveness of this new chemotherapy regimen.  I will see my my lymphoma specialist this week to check on my progress.  If the knots appear to be shrinking, we will continue with chemo, if they appear to be resistant, we will move on to radiation.  Thank you for your prayers! Love, April

My lymphoma specialist felt the knots on my forehead yesterday.  She determined that not only are they not receding, but that they are growing. She said we can’t continue with the current chemotherapy regimen (R-EPOCH) because these tumors are resistant.  She also canceled the PET scan which was to immediately follow my appointment with her.  Based on the MRI, we are still looking at just this area on my forehead, and from her physical exam, she can tell that they are growing/active tissue – no need to go through a PET scan to tell that.

Sometimes tumors are resistant because they have mutations that don’t respond to the prescribed treatment.  I’m in the hospital now receiving a new chemotherapy treatment called RICE.  It isn’t any better or worse than the R-EPOCH – just some of the drugs are different, so we may get a better response.  We will just observe and see if the knots respond.  My doctor is also consulting with my physician at MD Anderson, and will have my previous biopsies run again to look for further mutations that may help with my treatment.

The attending physician just left my room. As usual, I had a million questions.  🙂 He assured Jonathan and me that there are more drugs/regimens to try if this one does not put me into remission. I will be in the hospital until Thursday – this regimen has a shorter infusion time.  It is also a three-week cycle as my previous R-EPOCH regimen.

Please pray for the effectiveness of this treatment, wisdom and discernment for all medical professionals involved, our complete trust/peace in God, and renewed energy as we moved forward.  I’m sure you can imagine the extensive range of emotions we are experiencing. Pray that our faith prevails and that God’s glory is seen through all of this.

Happy Birthday and Happy Easter.

I just want to say Happy Birthday to the love of my life. April, you have shown amazing faith and strength through this challenging time in our lives. I am truly amazed. Last year had the challenges of the unknown. This year will be different, and I look forward to what we become through this. I look forward to the adventure that God has for us.

Of course, this is Easter – the most important day of the year, and the reason for life’s hope and joy. What a great year for these two days to come together. Let’s CELEBRATE today – Christ IS risen, It’s your birthday, and we are blessed.

ALL OF MY LOVE – Jonathan

Since I didn’t hear from Vanderbilt yesterday or so far today, I got the nerve up to directly text my doctor on her cell phone.  She called back right away.  She said the MRI shows 2 cm of soft tissue on my forehead (the knots).  My sinus looks clear from what she could remember from reading the report, and she scheduled a PET for Monday at 11:30 am.  She believes the knots will “light up” (are metabolically active – signals increased cell activity, etc.) on the PET.

Her plan is to continue the current chemotherapy regimen (I’m halfway).  Then radiate if there is still resistance.

So, I’m thankful that the frontal sinus is now clear – the lymphoma there seems to have been effectively treated by the chemo.  These knots are persisitent, but with continued chemo and possibly radiation we can knock this out.

Please pray that the PET on Monday does not “light up” or if it does, that it remains to be localized to the area on my forehead.  The chemo regimen I’m on is very strong.  Please pray that my body, specifically my heart, will recover well when all of this is over.

Happy Easter!  He is Risen!  I’ll update again when I get Monday’s PET results. ~April

Vanderbilt called me yesterday afternoon to tell me that the MRI machine I’m scheduled for is not working, so I will not be able to have my MRI today.  This is another example of where I used the word, “Ridculous”.  After some persistence and finagling, the scheduler was able to work me in at a satellite facility for Friday @ 1:45 pm.  Hopefully the results will still be interpreted in time for my doctor to work with my insurance and to get the PET scan scheduled before my Monday admission for chemo.  Thank you for hanging in here with me.  I appreciate your prayers.

Just a quick update on my scans.  The MRI will continue as planned for 6:15 pm tomorrow evening.  My insurance is denying coverage of my PET (as usual).  My doctor assured me that after we get the results from the MRI, she will be able to show the need for the PET. She will order it to be done prior to Monday’s admission for chemotherapy (otherwise, we have to wait another 3 weeks to get the chemo out of my system).

Please pray that the MRI looks great!  Obviously, it’ll show knots on my forehead, but please pray it is all localized.  Pray my sinus is clear and that nothing aggressive is seen.

I’ll update with the MRI results, and what time/day the PET is scheduled for.  The PET will show if these knots are metabolically active or inactive fibrotic tissue.  Please continue to pray for remission and for wisdom for all of the physicians involved with my care.

Week 2 in the cycle is coming to a close – thank goodness!  It was a tough week that thankfully took a positive upswing by Friday/Saturday.  In addition to anemia this time, I have had a very low white blood cell count (immunity fighting cells), so I’ve had to take some extra precautions to prevent getting sick.  With remarkable timing, our oldest child began vomiting early Saturday morning, so she and I have been kept separated until her fever fully passes (hopefully today,) and there has been a lot of Lysol in use.

When I am at my lowest physically, it is hard to stay in good mental spirits.  I think I used the word “Ridiculous” 100 times to myself or to Jonathan this week as I struggled to get a 3 minute shower, asked my mom to put food on my plate, grumbled about the trials of the last several months, etc.  I think endurance is my biggest challenge now.  It seems like this has been going on for a long time, and when you are at the bottom of your reserves, you wonder how in the world you can keep it up.

From reading scripture, praying, observing, etc., I think God is really telling me to calm down, be still, trust Him, patiently wait, and let Him lead me through this.  I’m not a patient person, so this is a lesson that is really hard for me to put into practice.

Their strength is to sit still.  Isaiah 30:7

Be still, and know that I am God. Psalm 46:10

I have my two important scans on Thursday.  My PET scan will be at 2:30 pm and my MRI will be at 6:15 pm (central time).  Please pray that the results show that my treatment is working, that the knots on my forehead are inactive (just leftover fibrotic tissue) and that the doctors can interpret the two scans as remission for my lymphoma. Please pray that I’ll fully trust God, I’ll be patient, I’ll have increased stamina and that I can rest in Him – it is exhausting trying to control something that’s impossible to control!  🙂

In lighter news, I have a wig now.  I’ve had it for a few weeks.  It actually looks pretty good.  When I get a good picture, I’ll post it.  I think it’s funny because when our little boy first saw me wear it he asked, “Who pulled your hair out?” (Like pulled it out of my head and made it long.)  🙂 I switch between hats, scarves and occasionally the wig, which he refers to as my “hair hat”.  I’m thankful for the smiles the kids put on my face by just doing normal kid stuff – like our tweens making their own fashion choices, and confidently saying goodbye to me at 7:50 am with sunglasses and a mix of seasons/prints/colors as their clothing choice.  Inspires me to have a little fun with my scarves, hats and ‘hair hat’ as I head out of the house – why not be creative and try not to blend in so much?

Well, we are wrapping up Cycle 3 of this chemotherapy regimen.  Currently I’m awaiting a blood transfusion – thankfully my first through this entire trial.  My hematocrit is just too low to not treat it before I’m discharged. Maybe this will prevent some of the overwhelming exhaustion that awaits me for week 2.

Jonathan’s parents brought the kids up for their first visit yesterday after school.  Previously, they were not allowed because of flu precautions, but those have been lifted now.  I thought maybe it would be good for them to see where I’ve been hanging out so much, and see that it’s not such a scary place.  I think the highlight for them was watching the Vanderbilt Life Flight helicopter land and take off outside of our window (while eating sherbet from the nurses’ station). There were a few tears when they left, even after assuring them I’d be home tomorrow.  I just think there’s so much emotion under the surface.  How in the world do 3, 9 & 11 year-olds truly express what they feel when their mom is sick for so many months?  We just take it day-by-day and try to have an open dialogue while not saying more than necessary.

I’m attaching some more images.  Our oldest child sent her new book fair poster to the hospital to lift my spirits – that’s me and her (as cats) on the beach. 🙂 She also wrote an encouraging note – notice it’s a little different from the typical sentiment.  🙂 love it!  Shows the genuine thought behind it! Also, a little scripture and uplifting words from my daily devotion. And as a proud momma, I have to throw in 2 cute shots of my baby boy that I came across.  I promise I’ll highlight our middle child again soon. . .

I’ll post when the dates of my PET scan and MRI are scheduled prior to Easter.  Thank you for your prayers for healing and strength.  I’m hoping this will be an Easter like no other!

Well, Cycle 3 of my R-EPOCH chemotherapy is in full swing. There is very little to report, so that is good. So far, I’m tolerating the chemotherapy well. The only unusual aspect to this visit is a cardiology consult that is ordered to check on some minimal v-tach and PVCs I had yesterday. We just want to get it thoroughly checked out for peace of mind.

Attached are a couple of views from my room window – I think it is one of the biggest and most beautiful rooms in the entire hospital. (The photos don’t do it justice.) I especially love to see the lights at night! Jonathan has, once again, decorated the pain chart. Our night nurse commented that someone else had done that in a room down the hall and she loved it. I informed her that that was from our last visit. 🙂 The kitchen must of heard of my over abundance of ranch dressing from my last visit, so they cut it back to 6 packages of dressing this time. And I’ve attached a Bible verse that Jonathan shared with me that really seemed relevant to our situation.
Please continue to pray that this cycle of chemo is the one that knocks me into remission. I will have a PET scan & MRI prior to Easter that will show the progress we have made. My lymphoma specialist says she believes it WILL show remission (even if I can still feel the knots on my forehead – could be just fibrotic tissue). Please pray that we FINALLY have good concrete news!
There will still be a long road ahead with Chemo, Stem Cell Transplant and possibly radiation. Thank you for your love, support, and above all, prayers! Love, April