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!

Test Results!

 

The much anticipated test results have arrived, and it is wonderful news!  Lydia has no leukemia cells in her body - so she remains in remission.  Additionally, the transplanted cells have grafted and reproduced healthy cells throughout Lydia's body.  This was confirmed by each of the samples taken by the bone marrow transplant team.  The doctors told us that this test result is the best we could have expected - Praise the Lord for He is Good!

 

So where do we go from here?  Lydia is still weak and highly susceptible to infection so she will remain quarantined around the home for at least another month.  The doctors will begin the process of slowly weaning her off some medicines.  Next month, we will discuss taking out her broviac line provided that Lydia is drinking enough (which she is not at this point).  Lydia's twice weekly clinic visits should also be reduced sometime within the next several weeks.  Lydia also needs to practice her walking and crawling and hopefully this will come as she regains some strength and energy.  Bottom line, we are hoping to have a rather "normal" situation by Christmas. 

 

Once again, we thank all of you for the prayers and concern over the last six months.  We are certainly not out of the woods yet, but this positive test result is extremely encouraging.

 

 

 

Lydia helping her brother, Daniel, put out fires.

This Week - Post Transplant Day 100

We are pleased to report that there has been little drama with Lydia over the past two weeks, and for the Kovac family, that is a really good thing. All of Lydia's blood counts remain in normal range, she continues to eat well, and most importantly, there is no evidence of any rejection of the stems cells.  Lydia continues to be a good medicine taker - she orally takes six in the morning, two in the afternoon, and seven at night!  She continues to be followed closely at her twice weekly clinic where blood levels are checked and various medicines are administered through IV.

Challenges still remain.  Lydia is not interested in drinking sufficient amounts of fluids so the doctors have continued her on an IV fluid drip throughout the night.  We have become quite effective in hooking up the IV line and calibrating the pump.  Due to her months of hospitalization, Lydia also does not crawl or walk, and she will begin physical therapy very soon in order to meet these physical development goals.  Finally, Lydia has prolonged fussing periods especially around bedtime, but we think this is related to her teething.

This week is another big week for Lydia because she will reach the critical 100 day post transplant milestone.  Lydia will have another bone marrow aspiration on Monday, and the results will confirm just how well the new stem cells are working and replicating.  They will also confirm what we hope is the continued absence of leukemia cells.  Please pray for Lydia as she undergoes this test Monday morning and that we are blessed with good results.  It typically takes a week to ten days for the complete results to be revealed so we hope that our next report is a good one.

Medications

Starting the pre-bed routine

Lydia's medicine table

Lydia has now been home for over two weeks and continues to improve more and more every day.  We are especially thankful that she is now eating much more and drinking fluids.  The blood counts are still good and no sign of any rejection of the transplanted cells. The doctors have also said that her nutrition hookup (that is inserted 12 hours a day through her pic line) may also come to an end soon. However, the medicines will continue.  

We now have an evening pre-bed routine that includes about 30-40 minutes of preparation and ingestion of various medicines.  Angela is required to properly measure different levels of medicines and orally syringe them into Lydia.  Thankfully, Lydia likes the taste and does not put up too much resistance. 

Saturday morning play

The resistance comes with the extensive process of flushing her broviac line (the line running directly into her major artery) and ensuring that the line is swabbed properly with alcohol in order to prevent infection.  It is difficult to keep Lydia still during this process.  We then hook Lydia up to a pump that provides intravenous nutrition throughout the night. We occasionally have to contact the on-call nurse for guidance when we have to reset the computerized pump or when we have questions regarding potential infection hazards.  Needless to say, it is a time consuming and meticulous process that is quite challenging every night - especially when there are four other little children to look after.  However, we know this process is temporary and "we know that suffering produces perseverance; perseverance, character; and character, hope."  Romans 5:3-4.  Most importantly our little Lydia is home and progressing well!

Hair

We are happy to report that Lydia's hair is finally growing - can you see the dark sprouts on top of her head?  This is yet another positive sign that she is recovering well.  We are also excited that Lydia is eating much more on her own and has learned to sip milk through a straw.  The doctors have reduced her IV nutrition from 16 hours to 12 hours a day.  At her clinic visit today, the doctors indicated that Lydia is "doing really well" especially after her earlier bout with VOD.  All her blood counts are returning within normal range and she is sleeping through the night - sometimes as much as 12 hours. We remain steadfast in our prayers for protection from serious infection and the continued grafting of the stem cells.