One Year Post-Transplant Results

Lydia - July 2013

   It has been almost 1 1/2 years (March 30) since our little Lydia was first diagnosed with leukemia.   She immediately began a grueling regimen of intense chemo to kill all of the leukemia cells and then her bone marrow. After the last round she received a bone marrow transplant, on June 29.  Throughout this past year, Lydia has made miraculous advances with the improvement of her immune system and overall health to normal levels.  Today, she is a happy, feisty, well-adjusted toddler who is an absolute joy to our family.  More importantly, the results from her one-year, post-transplant test that were obtained late last week show that Lydia is still 100% Cancer Free!  All the cells being created by Lydia are now healthy ones stemming from her sibling donor as opposed to the problematic, leukemia cells her body once produced.  For this gift of continued life, we thank God immensely because we know that sometimes our prayers are not answered in the way we feel things should be done.  However, through all of this, we have learned to trust way beyond our human comfort level because we have been promised that "in all things God works for the good of those who love him, who have been called according to his purpose.”  (Romans 8:28).  We have had the assurance from the beginning that our all-loving God loves our baby even more than we do, and we knew that even if the healing didn't come, his ways are still higher than ours.  We are so grateful that he heard our heart-felt cries, and those from all of you, and answered our prayers with healing.

Lydia - July 2012

Early on in Lydia’s disease, the doctors provided a timeline of treatment complete with various milestones that needed to be reached for successful recovery. She met them after each round of chemo pre-transplant, and then at her 28-day and 100-day post-transplant bone marrow aspiration test dates.  By the grace of God, she also survived a life-threatening liver disease that developed shortly after her transplant. There were also milestone dates for discontinuing the many medicines Lydia originally took:  she came home on eight medications administered several times a day, and 12 hours of intra-veinous feeding.   Lydia's last dose of any medication was last Friday, and she is eating and drinking like a champ!  She has had one (or two after transplant) broviacs (like pic-lines) in her chest since diagnosis, and she now has none! There was worry over the donor cells being rejected – none of that has happened thus far. The most significant marker was the one-year post-transplant test completed a couple of weeks ago.  Lydia was sedated and significant blood samples and bone tissue were extracted from her bone marrow for testing.  Late Thursday afternoon (July 11, 2013), our hematologist/oncologist called to share the good news that Lydia’s results were the best they could have expected!!

Lydia - July 2013

  So where do we go from here?  Having favorably reached these milestones, the prognosis for Lydia is quite good.  The great majority of  leukemia patients in Lydia's position make a complete recovery and go on to live normal lives.  Lydia will continue to have her blood checked every few months to monitor her levels.  Her immune system is functioning well so she is able to fight off common colds and infections. We are also able to once again begin her vaccinations that were eradicated with her the transplant.  Shots never sounded so good! 

   Therefore, we are at a good point in this journey, but the story is not finished yet.  We are well aware of all the continued risks that are present with leukemia patients.  However, Lydia's health will remain in God's hands and that is also where our trust will remain.   "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts your minds in Christ Jesus." Philippians 4:6-7.  Peace to all of you and many thanks for your continued support and prayers!

Forward Progress

On June 21, 2012, Lydia was in a very difficult spot. Her blood counts and immune system were wiped out so she could receive a bone marrow transplant filled with healthy donor cells. In the immediate aftermath of this procedure, there were many uncertainties which included a critical liver disease that was life threatening for Lydia. We were helpless to do anything except pray, support each other, and wait for God’s will to reveal itself.

Now, eight months later, the Lord has blessed us with peace and reassurance through Lydia’s unbelievable progress - especially over the last month. Lydia is now down to only one medicine (an antibiotic) which is taken three times a week. This is significant progress from the total of eight medicines that she was ingesting on a daily basis in the months immediately following her transplant. Most importantly, the immune suppressant medicine finished last week signifying that Lydia’s bone marrow transplant is working and there is no rejection of the donor cells! Also, her hair is growing (with cute little curls) – the chemo and medicine had originally delayed the hair growth.

But that’s not all, Lydia has experienced many other joyful triumphs this past month to include:

• A first bath where Lydia was able to sit up and play in the tub. The leukemia set in when Lydia was only seven months old and too young for independent bathing. As she grew, the broviac line prohibited splashing around in the tub so baths were still out of the question. But ever since the broviac was taken out last month, bath time has become one of Lydia's favorite activities.

• Sleeping through the night AND in her own crib. No longer is Lydia brought into mom and dad’s bed in the middle of the night on a frequent basis. Now, if only we can get mommy to regularly sleep through the night!

• First grocery store run. Lydia is now able to go out in public, and she just loves watching all the people and action in the grocery store. However, we are still careful of unnecessarily exposing Lydia to publically confined areas with many people, at least until cold and flu season is over.

• Eating well and feeding herself. Lydia has become quite an eater. Her favorite meal is breakfast and she loves “dips” of all sorts (syrup, ketchup, ranch dressing, etc…).

• A robust vocabulary. Okay, maybe we are exaggerating a little :). However, Lydia does have about 25 core words and her own little names for her brothers and sister. You can even ask Lydia how she is feeling and her response will be “GOOOOD!”

• Lots of new molars and eye teeth, for a total of almost 16 teeth!

So where do we go from here? As long as Lydia continues on her favorable course of improvement, she will be reduced to only one hospital visit per month for blood count checks, and infrequent infusions (as needed) to help prevent infections. Eventually, these visits will be spaced out even further. Lydia will be taken off her sole remaining medicine, the antibiotic, at the one year anniversary of her transplant (June 29). Also at the one- year post transplant mark, Lydia will have a bone marrow aspiration to completely assess the condition of her cells. If all checks out, Lydia should have a normal childhood with very few limitations. Of course, everything is in God’s hands and we will continue to pray for this ugly cancer to never return and no serious side effects to Lydia's vital organs as she grows older. Peace be with you!

I'm Walking

The much anticipated first steps have arrived. On January 31, 2013, Lydia started to walk. Her little journey initially began with two short steps but quickly transpired into a 23-step walk. Lydia is now freely roaming around the house playing with toys, carrying around the Wii controllers (her favorite), and even trying to sweep the floor with the big broom!  As you can see from this video, Lydia is thoroughly enjoying her new found independence.





3814 from Dawn Luecke on Vimeo.

My Broviac Is Gone!

Lydia wants to share the excitement that her Broviac line was surgically removed this past Monday.  She had a Broviac line (and for a few months two lines) in her little chest since last April.  The line actually broke on Saturday evening.  Instead of replacing it with a new line, the doctors decided that Lydia was progressing well enough to go without replacing the line.  So now, Lydia's future blood draws will be taken in the more traditional manner via a needle prick.

Lydia's overall condition is just great.  She remains in remission and her blood counts are excellent.   Lydia's immune system is also very strong.  In fact, over the holidays she came down with the flu and was able to fight the virus off with little problem.  Lydia's physical strength is also improving.  She stands more easily and has learned how to safely crawl up and down the stairs.  We are convinced that she will be walking soon.

The rest of the family is doing well and enjoying the "normalcy" of the winter routine.  Angela and Paul are also fine and slowly recovering from the challenging emotional journey of the last nine months.  We are praying for a less demanding 2013 and Lydia's continued improvement.