Archive | July, 2013

A quick update from Michigan!

31 Jul

Things have taken quite a few twists and turns. As mom stated previously, I have been admitted here in Grand Rapids. Things medically have shifted which is what has caused the intense bone pain I am experiencing throughout my entire body. Also, I continue to battle pneumonia which was the cause of my fever which comes and goes everyday.

In the past two years you have heard me say I have no immune system, no hugs, the less we touch the better, I have no white count. Out of no where my white counts have sky rocketed up, which is NOT a good thing and Is the cause of the severe bone pain. Equally bad is that this is a sign that we are losing any control (if we had any) of the disease. So I sit here, still with pain, but better control. The plan at this point is to get me to Houston, and hopefully start the next experimental drug.

Whom have I in heaven but you? And earth has nothing I desire besides you. My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Psalm 7:25,26

TOGETHER AT LAKE MICHIGAN

30 Jul

This is Allie’s mom.  I’m going to try to catch you up on the past few days as Allie has been extremely busy since returning from Houston last Wednesday.  She was very encouraged that Dr. GM from MD Anderson felt it was a good idea she return home to join her family for our annual family vacation at   Lake Michigan.  She also was very elated that she would be able to see Paige perform in Oliver at the conclusion of a very exciting two weeks of drama camp.

Adam, Allie and Paige drove half of their trip to see good friends Friday after the play and arrived at the cottage Saturday afternoon very exhausted.

Unfortunately, Allie started having back pain on the trip and the past few days she found herself needing to rest more often. Last evening new and unfamiliar symptoms of bone pain arose in her torso.  Her pain became very intense throughout the night keeping her awake. Much to her dismay, a prescheduled appt. for labs and a blood transfusion evolved into getting admitted to the hospital in Grand Rapids due to her intense pain and a high temp.  Their goal is to find the source of the fever and get control of her pain.  Once she feels better, she may return to Houston for the new trial drug just recently approved.

It has been wonderful to have the support of family this past week.  We continue to be amazed at Allie’s courage as she deals with the sufferings of this disease. Your prayers for Allie’s next steps in this difficult journey are much appreciated.

Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:12

Beemer and Armstrong Girls

Captian Sundaes

Molly and Megan

Together in Houston

24 Jul

I have been so thankful for my time with Allie here in Houston. While I would much prefer Allie to be home with her family, I am cherishing our time together and am blessed to be at her side for a few days.

Monday was a long one at MD Anderson. We arrived around 9am and other than leaving for lunch, weren’t finished at the hospital until 1:00 am. It was an exhausting day for Allie. She had lab work, meetings, a biopsy and finished the day receiving the red blood cells and platelets she needed. I had no idea the process of receiving these products could involve a 3 hour wait and then 5 hours to complete the transfusions! She has done all of these things countless times and I am amazed at the strength the Lord is providing in order that she can continue to move through each day.

Tuesday was a shorter day at the hospital. The biopsy results showed no change in the level of cancer present in Allie’s blood. Dr. G-M’s recommended course of action is for Allie to return to Ohio, enjoy vacation with her family, and return to Houston in several weeks to begin a different trial drug. We are both so thankful there was no cause for her to be admitted to the hospital during this visit and that she will be flying home on Wednesday!

The Lord has given Allie such a gift of loving others by taking an interest in their lives, asking questions, and treating them as friends. I believe Allie’s confidence in being completely herself in most all situations draws people to her. I saw this clearly as we made our way through different parts of the hospital over the past couple of days. Allie knows many of the staff members by name and consistently reaches out to other patients by asking them about their stories. It was clear the staff was happy to see her and that patients were encouraged by their interactions with her. The Lord is loving many through Allie and His spirit within her is shining clearly through in the midst of so much suffering.

There are no scheduled appointments at the hospital on Wednesday! Other than picking up a couple of prescriptions, the morning should be restful before flying home in the afternoon – me to Tennessee and Allie to Ohio.

The Lord blessed me tremendously when he brought Allie into my life at Taylor’s orientation 14 years ago. Over the course of time and walking through many different seasons together, Allie has become more of a sister than a friend. I am honored to know her. This chapter of her story has challenged me, changed me and brought me closer to the Lord as I know it has for so many others. I am forever thankful for the gift of Allie’s friendship.

Emily

Sent from my iPhone

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14 But thanks be to God, who in Christ always leads us in triumphal procession, and through us spreads the fragrance of the knowledge of him everywhere.
2 Corinthians

Waiting

22 Jul

Waiting seems to be a trend in this journey. I find myself waiting for many things. Life has taken a 365 degree turn for me in the last sixteen months. If you knew me pre cancer you know sitting and waiting are not my forte. Yet this life I live now is a sit and wait lifestyle. Waiting can be hard and frustrating. Thankfully i have company in my waiting; visiting with my dear friend Emily allows time to pass quickly! Today we waited and waited more. We also wait for biopsy results. Waiting is part of my new job. I think I will start looking for a new job. :)

Our soul waits for the LORD; he is our help and our shield. Psalm 33:20

Another update

21 Jul

Guess where I am sitting? I am on a plane back to Houston for a biopsy which will mark the end of the cycle for the trial drug I am on currently. It was wonderful to be home. This is where I belong and hope to resume my role as wife and mom again very soon. As we already know the first induction round of this trial did nothing for my bone marrow. I wish I could say I was optimistic that this second round did something, but as I see how my gums have worsened again and possible new tumor growth on my other leg it is clear the drug helped temporarily. It seems that as soon as the chemo is out of my system the cancer just keeps doing its nasty thing. I am having a bone marrow biopsy in the morning and see Dr. Ggm in the afternoon. It will be a full day. I know I will need blood products. As we have shared before MD can turn into an all day affair quickly. I will see infectious disease on Tuesday to keep tabs on my pneumonia, I am hopeful that all will go well. I hope to return home on Wednesday to see my Paige perform in the musical she has worked hard at while at drama camp, and join my family on our annual vacation.

Thankfully with the help of family in Michigan I am able to receive products while we vacation. It will be good to be with my family and partake in what I can. This vacation is quite nostalgic for me. I love it we have gone since I was 5 and it is a highlight to my summer. A old cottage on the beach, family, beautiful sunsets and family adventures. I am hopeful to be there this year.

The drug that I have mentioned prior which is targeted to my translocation is open. My dr would like to give the drug a few weeks . This would allow them to work on dosage and hopefully allow me to get good results. Meaning I wont be the second person on the drug, yikes! We will develop a plan tomorrow. Please pray that His plan is clear to us. It’s so hard at times to know if I am pursuing what He wants. I trust as we seek His will He is leading, but there are days I wish He would hollar at me, “This way Allie, come with me! ” We keep taking each day in stride, begging to hear and see Him in this journey.

Trust in the LORD with all your heart, and do not lean on your own understanding. Psalm 3:5

For thus said the Lord GOD, the Holy One of Israel, “In returning and rest you shall be saved; in quietness and in trust shall be your strength.” But you were unwilling, Isaiah 30:15

Celebrations

19 Jul

Today was a full day. We celebrated a friends birthday by planing a play date around her. Hayleigh missed her best buds birthday party while in Houston, so we wanted to celebrate! Hayleigh and Mollie had a great time with Olivia and celebrating her 6 birthday.

Paige completed her first week of drama camp. She is loving every minute and wishing for more. She enters with great excitement and returns to the car ready to practice with our cd! It is fun to see your child connect to something and know its a great fit and that it brings joy! Paige also had the privilege to celebrate our neighbor Noah’s 8th birthday going to dinner and the zoo. Celebrating life is so fun.

I am thankful it’s Friday for some reason it feels like less pressure! Hoping to sleep in!

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Trundle Night?

18 Jul

Hayleigh generally waits for a day when she and Paige have had fun together, played nicely and laughed a lot. Around dinner time she will ask Paige, ” is it a trundle night?” Paige loves this sense of power, to accept or decline. Tonight she accepted. Hayleigh was thrilled, delighted and excited. She adores her big sister and loves this time even if it is sleeping. Tonight was a trundle night. I love watching our girls choose to care for and love each other. I can only pray they grow up knowing how much they need each other and the privilege it is to have one another.

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Your Days

16 Jul

Tonight we had the chance to celebrate one of our best friend, gracie, 5th birthday. We were with friends, enjoying others and watching a lot of kid fun happening! Han knows how to throw a party, in fact she has helped me pull of throwing parties for my kids the past two years because to her everyone needs a party! It was great to be out with friends as a family.

A friend inquired about our days and how they are different. I figure if she wonders, you might too! I love to go to bed and really enjoy a good half hour in the morning to lay and pray and ponder what the day holds. Sometimes I doze but most the time just lay. Once I have made the plunge into the day I join adam for a cup of coffee ( I used to love this, now it doesn’t taste as good). We enjoy reading and quiet time generally with paige around, she is our early riser. Every days events are different with kids, but generally on the go somewhere. Twice I week I have labs and go early am as I usually need platelets. The heat has slowed me a bit but trying to find a balance. There are plenty of projects to be done around home, but my main priorities are my husband and kids! I am blessed to have extended family that desire to travel to see us. We have enjoyed lots of visits. I am able to normal things like dishes and laundry, which is nice I like contributing to our homelife. I enjoy baths and bedtime routine. I generally am exhausted by days end. I try to be awake to spend some time with Adam but each day is different.

The biggest adjustment for me is the disconnect between my mind and body. I often feel like life should be normal I should be able to work out, carry my kids, give piggy backs, but my body says no. Lately the most consistent issue has been headaches. Our days are enjoyable. Adam has made life feel normal. Thankful for time together.

Psalm 16
5 The LORD is my chosen portion and my cup; you hold my lot.
6 The lines have fallen for me in pleasant places; indeed, I have a beautiful inheritance.
7 I bless the LORD who gives me counsel; in the night also my heart instructs me.
8 I have set the LORD always before me; because he is at my right hand, I shall not be shaken.
9 Therefore my heart is glad, and my whole being rejoices; my flesh also dwells secure.
10 For you will not abandon my soul to Sheol, or let your holy one see corruption.
11 You make known to me the path of life; in your presence there is fullness of joy; at your right hand are pleasures forevermore.

How are you?

14 Jul

The question of the day. How are you feeling? Most of the time well. I feel my eyes tell my story most clearly. When I feel well I feel alive through my face and eyes. I notice as I wear down or hit a wall that my eyes feel less alive. Most days lately I feel well. I love the morning, the slow wake up and beginning to the day. I have had great times with the girls and i have tried to seek out intentional moments. The days are passing quickly, too quickly. So, how am I? On any given day good. I have my moments of exhaustion or fatigue, but in general I can’t complain. Looking forward to tomorrow, as each day is a blessing!

Almost like usual

13 Jul

Over the last few days our family has gotten to do things which two years ago were simply usual. Allie has been home since Tuesday from the clinic. We spent yesterday at the pool. We used to do this all day and almost everyday in the summer, but as we sat and listened to our kids splash and laugh I realized how long it had been since we sat there as a family. Last time Mollie was an infant sleeping in the shade of our stroller, Paige was proud to be able to swim on her own, and Hayleigh was enjoying the safety of a flotation vest. Yesterday Paige finished swim team practice and spent the next few hours with her friends, even an offer of french fries couldn’t pull her away. That’s true love right there. Hayleigh is now figuring out she can leave the wall and swim on her own. She still makes me incredibly nervous but so far she hasn’t drown even once. Mollie is now a walking talking hilarious bundle of energy. She is using the vest that Hayleigh started in and she wants to follow her big sisters off the diving board. I think sometimes seeing them at the pool during the summer is the easiest way to see how they have grown from year to year. This visit we were joined by Mimi and Uncle Dave. It looked and felt a lot like it used to. It’s nice to have those moments, to see your family together in one place enjoying life. This past year has had far too few of those.

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