We just wanted to send out a big thank you to everyone that was able to attend the blood drive on Thursday.  I think over 120 people donated blood, and we signed up 22 people on the bone marrow registry!  What a terrific turnout for a good cause!

We had a great weekend.  We spent Saturday night in Jackson-the first time since before CJ’s diagnosis.  And we had fun trick-or-treating on Sunday in Columbus.

Wednesday of this week, Amy and I will go to the hospital for a panel discussion about the nursing during our transplant.  Then hopefully we will be heading up north for an extended weekend with Amy’s family.

Next Wednesday we have a scheduled surgery time for Charlotte to get her port removed.  It is a big step for Amy and me, but we know it needs to be done.  It makes us feel better knowing that Dr DeSantes is concerned more about serious infections than anything else at this time, so she needs to get rid of that soon.

 

Amy and I just wanted to remind everyone in the area to try to attend the blood drive and bone marrow registry on Thursday in Columbus.  Please feel free to email Amy or me with any questions.

We can’t stress how important it was for Charlotte to have blood donors and matches available on the bone marrow registry.

We would love to see you all there!!

Still no complaints from the Elske household.  Amy and I and the girls enjoyed some quiet time in Door County early this week.  We took a few days off of work and celebrated CJ getting off isolation by taking a small vacation, just to get away.  The weather was pretty miserable-cold and very windy, but we all had a good time enjoying each others company and just driving around the countryside.

 

We still follow the blogs of kids we know-and some we don’t- and now we have another prayer request for you…Neal is another 18yr old with AML.  He finished his treatment in June.  We spent a lot of time sharing the hospital with him and his family this spring.  It now appears that he has also relapsed.  And Mitch’s first round of chemo since relapse didn’t get him into remission so his treatment protocol is now even tougher.  These two young men should be enjoying their first year of college, not concentrating on fighting this damn disease again.

 

 

 

Things are still going great at home.  I just wanted to let everyone know about the blood drive/marrow registry signup coming up on October 27th in Columbus.  It is being held in honor of 5 area children that have been diagnosed with cancer over the last year.  It would be super awesome to see everyone make an appearance and even a blood donation or join the registry if you haven’t already!

Here is a copy of the flyer we are hanging around town.  Many thanks to Gina at BAHBAD.org and Robyn B. in Sun Prarie for all of their help.  Email me if you are interested in printing some of these out for yourself and want to hang some around your town/place of work.

 

 

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.

Another fun week under our belt.  Charlotte and Molly have been great.  Molly still likes to get up once or twice during the night, but CJ has been sleeping through most nights for as long as I can remember!  They both like to wake up pretty early though.  Seems as soon as they can see the sun peeking through the shades, they wake right up!

Amy and I took the girls to Madison on Saturday.  We went on a Betty Lou cruise of Lake Monona and had a super time.  We weren’t sure how Charlotte would react because she hasn’t been on a boat before, but she seemed thrilled to try it.  And she had a wonderful time running around the top and bottom deck and just climbing up and down the stairs!  She mentioned a few times that Daddy should buy her a boat like that so we could go cruising whenever we wanted!  Spose I better start saving my pennies now…

After the boat cruise, we took her to another Madison landmark, Ella’s Deli.  She had a few bites of chocolate ice cream but wanted mostly to have a big lollipop and go on the Merry Go Round a couple of times.  We might have even taken a picture of her smiling once!

Amy and I are getting involved in a blood drive later this month.  It is being held in honor of the Columbus/Fall River area children living with cancer at the Cardinal Ale House and Bowl in Columbus on  October 27th from 11:30-5:30.  We are working with a wonderful woman from Sun Prairie to bring the Bone Marrow Registry to the drive as well.  I don’t think I have to tell any of you how important it was to us to have marrow donors on the registry for Charlotte.  Did you know that each year, 3000 people die waiting for a bone marrow match?