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.

Merry Christmas

Lydia is having a wonderful Christmas this year! She has enjoyed the gift exchange activities and spending time with extended family. Lydia is now permitted to go out in public as long as she stays protected from large groups in closely confined places. Over the holidays Lydia will visit her grandparents in Ohio and attend a cousins wedding in Michigan. We are so thankful in this season of Hope that Lydia is well on her way to recovery and feeling better each day. We wish every one of you a wonderful Christmas holiday and a New Year filled with much joy.

Scoochin

Lydia still has not figured out how to walk or crawl; instead, she prefers scoochin. Lydia is quite proud of this method of mobility as demonstrated by the attached post-Thanksgiving dinner performance - enjoy!

Thankful

This year Thanksgiving will be an extra special holiday for the Kovac family. We acknowledge that our difficulties this year have produced enormous blessings for which we are extremely grateful.  Topping the list, of course, is Lydia; her leukemia has enlightened us to a world we often overlook and take for granted. It is a world filled with dedicated and caring health care providers.  It is a world filled with family, neighbors, and friends that willingly, without expectation of anything in return, devote hours to helping a family in need. It is a world filled with God's love that manifests itself daily in numerous acts of kindness and in victory when battling a deadly disease. Thank you God for your guidance during the stormy times this year and thank you for the wonderfully kind people you have placed in our lives!

Since our last update, Lydia has made steady and favorable progress. Her medicines and clinic visits have been reduced. It seems that she is much more alert and happier now that some of the stronger drugs have been eliminated. Lydia is also becoming physically stronger. Although she does not walk yet, Lydia has found a way of moving about by scootching around on her bum :). And of course, like all Kovacs, she is a big talker with her own cute little names for each of the children. Lydia is still quarantined to the house, probably for another month, but everything is progressing smoothly with no major setbacks.

There were certainly times when we doubted where Lydia would be during this holiday season. We are so thankful that she is comfortably in our arms at home. Have a great Thanksgiving and be thankful for the many blessings in your own lives, especially those that have come amidst difficulty!

Positive Signs

Lydia continues to regain her strength and might even decide to walk or crawl or do something mobile this year. :) In all seriousness, her muscle development and mobility are slightly delayed after four months in a hospital room hooked-up to an IV pole, but we are told not to worry.  She has started to work with a physical therapist who comes to the home and encourages Lydia to move independently.  Lydia just prefers to be in mom's arms and who can blame her after all she has endured.  We have learned that recovery is a very slow process but we are continually encouraged by many positive signs along the way.  For example, last week Lydia was taken off her nightly IV fluids.  This has been quite a reprieve for mom and dad who no longer have to go through the nightly preparation ritual. Some medications have also been reduced and others eliminated entirely.  Her twice weekly clinic visits have been reduced to one visit per week as long she continues to intake enough fluids and stay healthy. Lydia also continues to eat well.  In fact, one night Paul mistakenly gave her an adult size portion of food which Lydia happily ate resulting in a bloated stomach that took awhile to relieve.  Although the exact amount is still being disputed, Angela estimates that Lydia digested 2 1/2 adult size portions of Stouffer's Mac N Cheese (750 calories and 37 grams of fat)!  Paul has now learned to rely a little more on the measuring cups. :)

Beep. Beep. Lydia at the wheel

Lydia continues to be a happy child with wonderful social skills.  She enjoys playing with her siblings and is now permitted to spend more time outside.  Lydia has even adapted to staying with our babysitters enabling mom and dad to have some much needed alone time.  Lydia still cannot go out to publicly enclosed places (places with lots of people, germs, and not much air flow) but this too might be possible before the end of the year.  As for sleeping, it is a challenge to settle Lydia in the evening and often times she ends up sleeping next to mom and dad.  However, once she is calm, Lydia usually enjoys several hours of uninterrupted sleep.  In a nutshell, we still have challenges but everything seems less severe and there is much HOPE. 

As always, we continue to pray for God's peace and protection.  Lydia's situation is by no means over and she continues to require a great deal of attention.  But we remain confident that God has a wonderful plan for our family and our trust will remain in Him.  We continue to be thankful for every one's thoughts and prayers.  There are many people that have served and blessed our family in countless ways over the past months.  Although we may not have personally thanked everyone, please know that all of you are greatly appreciated.  Have a wonderful weekend!