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.

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!

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.

Happy Birthday - Angela!

First off, we want to wish Angela a happy birthday and express how much we appreciate her dedication to our family.  As you know, Angela spent every night (except two) in the hospital with Lydia.  By my calculation that is approximately 122 nights or about four months.  She has simply been an outstanding caregiver who is very much responsible for Lydia's positive outcome thus far.  We are so glad that Angela and Lydia are now home and we plan on having a wonderful birthday celebration today - Katherine will be taking on the cake baking task :)

Since Lydia's discharge on Thursday, things have been going fairly smooth aside from the typical frustrations.  For example, Lydia fusses considerably every time Angela is out of her sight.   We are still spending a great deal of time getting Lydia to eat and drink appropriately. And there are the medications - oh the medications!  They have to be administered three times daily and in varying doses.  This requires a great deal of patience and concentration to ensure that we are providing the proper amounts of medicine.  There are about eight different medicines.  We also have to hook Lydia up to an IV-type device for 16 hours each day to ensure proper nutrition and to avoid dehydration. Once Lydia begins to eat better, we can hopefully do away with this device.  Lydia must also remain in the home and cannot be around large groups of people. This presents its own scheduling issues as Paul and Angela take turns running kids around and shopping for supplies.  Despite these challenges, we are doing very well!

We plan on keeping this blog going with important updates, but don't be alarmed if the blog entries are less frequent.  Patients take a long time to recover from bone marrow transplant and the slow progress often does not lend itself to significant news worth reporting - so we will just pass on the highlights.  Peace be with you and have a great Labor Day weekend!

Discharge Party

It is tradition at Children's Hospital to throw a little party when a leukemia patient reaches remission and is able to be discharged home.  Today was Lydia's turn as she was finally discharged at 3:00 p.m. this afternoon.  As she walked out of her room, Lydia was greeted by numerous doctors, nurses, and patients who gathered to say their goodbyes.  Lydia won the hearts of many during her hospital and she received such excellent care for which we are very grateful.  Now, for the first time in ten weeks our family is once again together!  Barring any setbacks, this should be the last time that Lydia will have to endure such an extended hospital stay.  We are so thankful for this positive day and having our little girl home!

a pre-discharge visit by the musical therapist

Home Visit

Even though Lydia has not been officially discharged, the doctors have permitted limited home visits for a few hours each day.  Today, Lydia and Angela made it home for a nice visit and one of grandma's homemade meals.  Angela also managed to set out the kid's school clothes and supplies in anticipation for the beginning of school on Monday.  Lydia continues to slowly recapture her eating bite-by-bite.  The doctors have been supplementing her nutrition each day by continuing to hook her up to intravenous fluids. We are still hopeful for a discharge sometime next week, but then again, nothing is ever certain :)  Have a good weekend!

Angry at God?

A friend recently asked whether we had any anger towards God as a result of Lydia's leukemia and the difficulties that ensued. I know this is a common reaction for people when trouble strikes and there has been much debate over how a loving God could "permit" such terrible disease to strike little children. However, blaming God has never been an issue for us.

 God does not promise that everyone will always be healthy or get through life without serious trouble. Instead, God promises something even greater - that we will be forever loved and that we will enjoy an eternal relationship with Him and all believers with heavenly bodies forever free of pain and illness. We believe that God has a plan and is actively working with very good intentions that are not readily apparent. This is our assurance that "in all things, God works for the good of those who love Him." Romans 8:28. Many blessings have already resulted from this crises: the community has united in volunteer service for us, the prayer lives of many people have been enhanced, others have taken moments to thank God for the health of their own children, and the list goes on. We will emerge victorious - that is His promise. It will just take time and patience. "Wait on the Lord - All you who are in distress, wait on the Lord." Psalm 27:14.

We will be waiting a little longer for Lydia's discharge which was tentatively planned for today or tomorrow. The doctors informed us that Lydia is just not eating and drinking sufficiently enough for her to go home and that she will stay in the hospital for at least another week. Once again, a cancer patient's appetite typically takes time to return. It is especially challenging with little babies who are unable to communicate and unable to understand that discharge can't happen until you eat! Despite this disappointment and delay in the reunion of our family, we continue to be thankful that there is no evidence of any bone marrow rejection, cancer, or other serious organ problems. So we pray for patience as we wait upon God's plan for Lydia and the rest of our family!

Thanks Alisa - We Will Miss You!

One of our greatest concerns at the beginning of Lydia's illness was who would take care of our four children while Angela was in the hospital all summer.   Our prayers were answered when a neighbor recommended her cousin, Alisa.  We first met Alisa during a facetime session over the internet while she was still at college finishing up her four year teaching degree.  We immediately knew that Alisa was something special. 

Throughout the summer, Alisa typically arrived at the home by 7:30 a.m. and did not leave until 6:00 p.m.  There were many occassions when she was asked to go beyond these time limits and she always made herself available.  Not only did Alisa watch our four children at home, but she also spent many hours at the hospital watching Lydia while Angela would take the other kids on various excursions.  Alisa made it an extra special summer for our kids - she organized craft making, swimming, bowling and zoo trips, watched them at summer camp, peach picking and so much more.  She also fed the children and made sure they were always properly dressed and cleaned. 

Today is Alisa's last day with us.  We want to acknowledge her wonderful service and thank her for keeping our kids safe and entertained!  Best wishes on your return to University and that master's degree! 

The Journey

Katherine helps Lydia practice walking 8-21-2012

Many of you asked for a recap of our journey thus far.  Here are the highlights:

Aug 9, 2011 - Lydia Grace Kovac born

Mar 22, 2012 - Lydia fussy, temperature, little sleep

Mar 22-27, 2012 - multiple dr visits; preliminary diagnosis - virus or bug

Mar 27, 2012 - strep culture taken and returns positive; Lydia placed on antibiotics

Mar 30, 2012 - antibiotics not working; Angela takes Lydia to Children's Hospital (for third time in last week)

Mar 30, 2012 - after a day of testing; doctors inform us that Lydia has leukemia (Angela and Lydia admitted)

Apr 2, 2012 - spinal tap (no cancer in spinal system)

Apr 3-13, 2012 - First Round of Chemo begins

Apr 25, 2012 - Lydia discharged home (Induction 1 ends)

May 1, 2012 - Lydia and Angela readmitted

May 2, 2012 - Second Round of Chemo begins

May 4, 2012 - Praise the Lord - after first round of chemo, Lydia has no cancer cells (technically in remission)

May 27, 2012 - Lydia discharged home (Induction 2 ends)

May 30, 2012 - Successful Blood and Bone Marrow Drive

Jun 5, 2012 - Bone marrow draw (still in remission; no cancer!)

Jun 19, 2012 - Lyda and Angela readmitted (second broviac placed in Lydia)

Jun 20-27 - Pre-transplant Chemotherapy (sibling donor:  a perfect match and approved for donation)

Jun 29, 2012 - Bone Marrow Transplant (successful draw from sibling and placement into Lydia)

Jun 29 - Aug 21, 2012 - Lydia (with Angela by her side) battles sickness, vomiting, mucositis, broken broviac lines, sleeplessness, lack of appetite . . .

Today:  Lydia slowly regaining appetite and eating, no cancer, no bone marrow rejection, no vomiting and excited to come home!  They have been in the hospital since June 19, 2012 during this present bone marrow transplant and recovery phase. 

Post Transplant Day:  53

Total Days in Hospital since Diagnosis:  117 days

The Waiting

 Lydia is moving a mile-a-minute and she is very anxious to get home.  However, the doctors have indicated that she still has one more week to go.  Over the past week, Lydia has made significant progress.  Her liver numbers and stomach have returned to normal, and she was taken off the non-FDA approved drug yesterday.  Lydia has also been off her medicine pole for significant time periods enabling her to venture outside the hospital room for walks in the garden and down the halls.  Many of her medicines are now being administered orally.  We now pray that Lydia regains her desire to eat and drink normally.  So the waiting continues but at least we have positive news to sustain us until the big homecoming!

           "By your steadfastness and patient endurance 

                          you shall win the true life of your souls."
                                                                       Luke 21:19

Happy First Birthday

We could think of many other places to celebrate a first birthday, but Lydia's hospital room will have to do this year.  Lydia celebrated her birthday with her parents and siblings and the traditional birthday cake and presents.  She also enjoyed a ride outside of the hospital room in her favorite sports car. 

Lydia continues to progress very well with no additional setbacks.  Lydia and Angela are now in week eight of the current hospital stay and doctors will be watching her closely over the next week to determine when discharge is appropriate.  One very positive sign happened today, Lydia was taken off all the tubes from her medication tower!  She will now receive the medicines orally as we begin the process of preparing her for eventual discharge.  Because Lydia is still not independently eating enough solid foods, she will continue to be "hooked-up" every four hours for fluids and other nutrients. 

This has been one heck of a year for little Lydia and one she rather not repeat.  We learned a great deal about this wonderful child over the past year - she has inner strength, she loves people, she doesn't remain unhappy for long, and she wants to put this leukemia experience behind her :)  With God's help that will happen!  Happy Birthday Lydia - we all love you very much!