October 12th, 2011. Day +215   7 comments

It has been a stressful week.  No wonder my blood pressure is about twice what it should be.  After our outing last weekend, Molly ended up with a cold starting last Monday.  By Wed all of us were showing symptoms.  Amy and I started to worry that CJ might get feverish and end up in the ER.  But her temperature stayed normal all week, and she seemed pretty happy and her activity level was just fine and by the end of this last weekend, her symptoms are mostly gone.  Amy and I are now feeling normal but Ms Molly is still pretty congested.  But she is also happy and active so we think the worst may be behind her.

We had our clinic appointment yesterday-the first one in a month.  Charlotte was such a big girl, she didn’t cry once.  No crying for the check in procedures (height, weight, temperature, BP)-she usually doesn’t for this part, but she put up an absolute fit last time.  She didn’t even cry for the port poke!  Not a single tear…maybe a little whining, but she never seemed too bothered by it.  She didn’t cry for the Dr exam either so she really impressed us this time!  She was truly a big girl yesterday, and she seemed quite content to be there.

Dr DeSantes saw her and seemed very happy with her progress.  He hasn’t seen CJ in about 6  weeks so I think he was quite pleased with how well she is doing.  He also mentioned that it was about time we remove her port.  At this point in her recovery, the foreign object under her skin tied directly into her bloodstream is really more of an infection risk than anything.  This will mean she will need a regluar needle poke in her arm every blood draw, but it is a step to take for the right reasons.  It means she is doing well and the Dr is more concerned about infection than anything else at this time.  So we will be scheduling that for sometime during the next month.  Also to our surprise, he wants Charlotte to receive a flu shot so Amy and Charlotte will be doing that tomorrow.

We received her CBC numbers this afternoon and all looks well.  Her WBC is 4.1, Hemoglobin is 11.2, 289k Platelets, and 2340 Neutrophils.  We also received the results of her engraftment study last week.  She continues to be 95% or greater donor and we’re thrilled as Dr DeSantes says that is really the highest we can expect for her
to be.

We are so darn proud of Charlotte, and we think it is just terrific how well she is doing.  We will pray that she continues to make good progress and this last year will just become a distant memory.  But we spent a couple of days this past week with some families that earned our respect for a lifetime.

Sadly Amy’s 35 year old cousin, Alison, lost her battle with cancer last Wednesday.  Amy and I went to the funeral on Saturday and were so impressed with how well Corey and the girls are doing.  The strength and devotion the Foerster family showed over these last 10 months while Al endured round after round of chemo is uplifting.  Even with a wife that needed his love, care and support, Corey always made time to fill everyone in on how she (and the rest of the family) was doing.  She will be greatly missed by her family and, judging by the overwhelming show of support at her standing room only service (three+ hours of a never ending ending visitation line), the entire town of Slinger.

Amy and I took the day off today to make a trip to a beautiful little town in Minnesota.  Caledonia is the home of 5 year old Alexis and her family.  We have made mention of Alexis a few times before, and the attitude and fight she has shown over the last 15 months is unmatched.  She is now done fighting and will spend an eternity in a pain-free, GVH-free, leukemia-free peace only God can promise.  Alexis Klug passed away on Sunday and her service today was so touching I can’t stop crying.  We spent countless hours talking to her parents this year.  Alexis had her transplant in January, while CJ was there for her 4th round of chemo.  And Alexis was still fighting with infections and other serious side effects in the hospital when we arrived for CJ’s transplant in March.  The Klug family said goodbye to us when we left for home after CJ was released, then went back to Alexis’s room to be with her while she fought harder than ever against GHVD and the different forces that waged war on her little body.  All told, the Klug family spent over four months in Madison-3.5 hours from home, watching their little girl go through more than anyone should.  And their difficult times continued after they got home with fevers, infections, ER visits, ambulance rides and more admissions.  Whenever Amy or I had a bad day, Kim or Dana were always there to listen.  Many times during those nights we shared our joys and opened up with our fears as only parents of such children can.  We are so proud with how strong and determined they have been.  Kim and Dana have truly been our inspiration since we met them so many months ago.  We know how special their little “Peanut Girl” was to them and we can only pray that the Lord will provide them peace and comfort while He grants their daughter the rest she so rightly deserves.

We saw Mitch (the teen who recently relapsed with his AML) and his mother today at the funeral, as well as Alyse (another patient of AFCH).  We just learned today that she may also have relapsed since her transplant this past year which would sadly mean her second relapse during her cancer journey.  An unrelated bone marrow transplant will likely be in the future for both of these young adults.  We pray that both will find the donor match they need.  And at AFCH, Kate, an active and vivacious 12 year old with AML, just had her transplant yesterday and lost her leg to amputation as the infections that have plagued her for the last 6 months were not healing and threatened her life during transplant.  They all have been added to our prayer list and we ask that you add them to yours as well.

Thanks for taking the time to read up on us.

Posted October 12, 2011 by L. Elske in Uncategorized

7 responses to “October 12th, 2011. Day +215

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  1. Hello Elske Family – I just wanted to thank you for sharing your story with all of us! Although I don’t know you very well, knowing of Charlotte gives us all hope that with love and support, people can survive some of the worst things. When my sister, Theresa told me of Charlotte’s story last September, we immediately signed up to be donor for bone marrow. A few days ago, I received information in the mail that I may be a match for someone who needs a transplant. How amazing it is to know that I could help save someone’s life who may be as precious as Charlotte! Much love and prayers to you all as Charlotte continues to be a fighter! Roxy (Ehrke) Stahnke

  2. Wow. You said you were crying. And as I read on, I am crying with you. Amy and you are so very brave, and I know that you find your strength and source of bravery in the Lord. Where else can we go to when our hearts are so heavy with grief for those around us who are mourning the loss of their very much loved ones. God is our high tower, and we can run to Him and be safe. Sadness fills our hearts for the families still here on earth at the departing of the precious ones they grieve for. Your blog shows how your faith has deepened. As you face these times of great sorrow, you and Amy are a haven of strength and blessing for those around you. I am so sorry these souls have lost their battles here on earth. But what you wrote about being free from pain and endless treatments and being in heaven was a blessing for me. May God continue to fill your hearts with His peace and courage and strength always!

  3. It is so good to hear how well CJ is doing. I was so surprised to see you in Target. You would never know what she has been through by watching her. God bless you all!! And may he give strength to those still fighting and peace to the families left here while their angels went to heaven.

    Dawn

  4. How wonderful that Charlotte continues to do well. It IS another miracle. My prayers are with her every day to continue on with her good recovery. As well as prayers for all the families at AFCH. We know what they’re going through, even though it’s just as a grandparent, not as a parent. Our Malakai turned one year old in June, but he continues to hold his own at home. (You might remember that he had heart problems. He was in the hospital as much as out his first year of life. He was down the hall from Charlotte at one time.) He’s starting to walk, finally, and still has physical therapy, chiropractic therapy, and speech therapy to help him be comfortable and catch up on growing. He smiles almost all the time — he must know that God is watching over him, as well as all those other children. I’m glad you keep on emailing — it’s the first mail I open. God continue to be with your family.
    (Phyllis Kaesermann, Watertown)

    Phyllis Kaesermann
  5. I am sorry to hear about such a challenging week for your family and those you are close to. My thoughts and prayers continue to be with your family and will send prayers to these other families as well. I am glad to hear that almost everyone is feeling better, I hope Molly feels better soon. Sending strength your way.

  6. You should write a book Lon about all you and Amy and Charlotte and the journey you have all been on. It would make the number 1 seller. Glad all is fine.

    Joe & Sue Kaminski
  7. Pingback: September 19th, 2012. Day+558. « CJ Elske's blog

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