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! 

100% Donor Cells

Late this afternoon we received the wonderful news we have been praying for - the bone marrow aspiration revealed that all of the cells within Lydia are the grafted donor cells!   This means that Lydia is not making any of her original cells some of which had leukemia.  She even changed blood type to that of the sibling donor.  This of course is a huge blessing for us and places Lydia even closer to coming home.  She will be tested again at the 100-day post transplant point where we hope the positive grafting of the donor cells continues.  Have a great weekend!

Feeling Good

Lydia continues to progress and feel better with each passing day.  Her bone marrow aspiration on Tuesday was completed with no complications and the results will not be available until early next week.  However, the doctor did indicate today that an initial reading of a small sample did reveal that there were no leukemia cells in her bone marrow - what a relief!  We continue to pray that these results also show that the donor's cells are now replicating in Lydia's body.

The other challenge this week has been to get Lydia to eat solid foods.  Leukemia patients often have a bad taste that lingers in their mouths from the chemotherapy and this dramatically effects the flavor of various foods.  Please pray that Lydia's eating gets better because it is a major factor for determining when she can be discharged home.

Lydia will turn one next Thursday, August 9, 2012.  We originally hoped that she would be home by then and there still is a chance.  However, even if Lydia remains hospitalized, we will celebrate this wonderful life God has given us and pray that her second year will be a little less dramatic :)

Forging Ahead

 "To make strong, steady progress." 

This phrase best describes Lydia over the past week.

Today is no exception as Lydia saw the outside for the first time since June 19!  Even though it was a short spin around the healing garden on the sixth floor of Children's Hospital, it was a significant advancement for Lydia.  It also shows us how the simple pleasures, such as enjoying a beautiful day outside, should never be taken for granted.  Don't be alarmed by the mask either - doctors encourage every precautionary measure to keep Lydia free from harmful germs, especially those that occupy various floors of a busy children's hospital.  We should also see her medication tower get smaller.  At least two of those tubes send fluid and nutrients into Lydia and a major effort this week will be to encourage Lydia to eat on her own.  Stayed tuned for what we faithfully believe will be even more progress this week :)

Lydia Progressing Nicely

Lydia enjoying Saturday afternoon playtime with her new IPAD that was donated this week to the rooms of each leukemia patient at Children's Hospital Pittsburgh.

God is answering our prayers by continuing to guide Lydia through a successful week of recovery.  Lydia's VOD is now under control and should actually be going away sometime soon.  She has been weaned off some medicines and starting to eat more and more solids.  Lydia continues to sleep well (most nights) with little discomfort.  Next week on Tuesday, she will have her first post-transplant bone marrow aspiration.  This test will give us an indication just how well the donor cells are reproducing and working effectively in Lydia.  It will also determine if any leukemia cells are left which the doctors believe is unlikely given her condition.  So please keep the following three items on your prayer list this week:  

• (1) a favorable result from the bone marrow aspiration; 
• (2) continual progression in the cell grafting process; and 
• (3) increase appetite for solid foods.  Thanks again to all of you - so many of you have supported our family through wonderful acts of kindness and daily prayer. The difficulties of this journey have been made easier through you!

Quality Time

Lydia is having a wonderful week!  Daddy has been able to visit during his lunch hour and mommy was able to break away from the hospital for an afternoon Pirate baseball game with the kids and our summer helper Alisa.  We are so blessed to have such quality time with our children amidst all the difficulties of the last several months.

Lydia is steadily improving to the point where the doctors have commented that she has now "turned the corner" with her VOD liver condition.  A sonogram of the liver today indicated that things are now flowing in the right direction and the liver is slowly returning to its normal size.  Lydia will remain on the liver medicine for another two weeks so she has at least that time before doctors will even consider releasing her home.  VOD is not a recurring condition so once this is licked that should be the end of it.

On another positive note, Lydia began eating solids again this week for the first time in almost one month.  This too has been a slow process with just five little bites of solid food and some breast milk - at least its a start. Lydia also has some skin pealing on various parts of her body as a result of the intense chemotherapy she received.  However, this condition is typical for leukemia patients and, besides a little itching, we really don't think Lydia minds :).

It is so nice to see Lydia's frequent smile again and bouncing up and down when visitors come by.  After last week's intensity and worry with the VOD condition and the prospect of potential organ failure, we are now somewhat relieved.  God's peace seems to be present with us in an extra special way this week.  This peace once again reassures us that He is in control and that Little Lydia will continue to survive her various challenges along the road to recovery.

                "May the peace of God, which surpasses all understanding, 

                   guard your hearts and your minds through Christ Jesus." 

                                                                                     Philippians 4:7

Lydia's Out of ICU

Lydia awakes from a nap at 7:45 p.m. on July 21, 2012

 

 

 

Lydia was released from the Intensive Care Unit yesterday afternoon and is doing well.  Her VOD condition seems to be improving as a result of the new medicine and her belly is slowly decreasing in size.  The blood counts from the liver and kidneys also indicate that they are slowly improving.  Lydia was started with the VOD medicine last Tuesday and the doctors indicated that it takes about a week to see significant improvement.  Nonetheless, we are extremely thankful that Lydia is moving in the positive direction and that her VOD condition did not worsen.

Lydia's stem cell counts continue to be very good and the doctors are pleased that the grafting process is doing well.  Lydia also has not had to deal with any rejection symptoms or disease from the donated cells at this point and we count that as yet another blessing.  As you can see, this has been quite a roller coaster with moments of celebration and other moments of great concern.  Through it all, we continue to remain as optimistic as possible and look forward to the day when Lydia comes home!

Divine Intervention

Our family's faith in the power of prayer has been a very instrumental part of Lydia's treatment. We take seriously the directive: "Is any one of you in trouble? He should pray."  James 5:13.  We have continually requested your prayer because it can influence God's will. The scripture is filled with many examples of God's divine intervention as a direct result of prayer.  Take for instance the woman with the extreme bleeding condition that afflicted her for 12 years. The bible says that she suffered under the care of many doctors but the condition continued to worsen. One day, Jesus was near and the women was led to touch his clothes - she was immediately healed.  Jesus turned to her and said: "Daughter, your faith has healed you.  Go in peace and be freed from your suffering."  Mark 5:34.  Divine Intervention for the purpose of healing is possible and Faith is the key ingredient!

Lydia's swollen belly is shocking to see.  The VOD disease has caused the back up of fluid and her liver is struggling to respond.  This has been very difficult to experience especially when Lydia had been doing so well. However, we believe divine intervention is at work through the many faithful prayers on Lydia's behalf - prayers that are now being lifted up all over the country and beyond. Despite her swollen condition, Lydia continues to smile which has always been a positive sign for us.

And then there is divine intervention.  Yesterday, Lydia was miraculously approved for a medicine that is not yet on the market as FDA approved.  This medicine has been used successfully in Europe to relieve VOD and its use has been permitted in limited circumstances in this country.  Lydia did not meet the "special factors" for receiving this medicine.  However, the doctors were able to convince the pharmaceutical company to make a special exception, and Lydia was approved yesterday afternoon.  She began receiving the medicine last night.  It is suppose to heal the liver and reduce her swelling.  This is a tremendous blessing and, we believe, just another example of God's intervention in the protection and treatment of our wonderful Lydia!

Lydia's Liver

Lydia has developed a case of VOD which is an abbreviation for Veno-occlusive disease of the liver.  This occurs when some of the small veins in the liver are obstructed and compromises the proper functioning of that organ.  VOD in this case was most likely the result of high dose chemotherapy that occurred just prior to bone marrow transplant (BMT).  VOD occurs in roughly 40% of BMT patients. It causes Lydia to retain a large amount of fluid.  If not responsive to current treatment, VOD can become very serious, even fatal.

Right now, Lydia has just a moderate case but we need prayer and divine intervention for proper response to the current treatment plan.  We request prayer for the reduction in the amount of fluid retained by Lydia and for her liver to stabilize.  The doctors have indicated that Lydia has a "sick" liver but not a failed one.  Although this is quite serious, Lydia's liver can definitely turn around with faith and the healing power of God.  Please continue to pray for Lydia on this issue over the next several days!

On a positive note, the new stem cells are engrafting in Lydia quite nicely.  Her blood counts are way up and there is no sign of rejection at this point.  Despite all of her fluid retention, Lydia is still breathing well, smiling, and getting plenty of quality sleep hours.  Her liver counts are also good, we just need to get its proper functioning back on course.  Once again, please pray for Lydia's liver and that it recovers properly!

Standing Tall

      May integrity and uprightness protect me, because my
                        hope, Lord, is in you.  Psalm 25:21

Lydia is now over two weeks post-transplant and still standing tall.  She has many moments of happiness as Angela continues to shower her with love and attention.  However, this has not been an entirely smooth journey the last few days.  Lydia has been retaining excess fluids and her liver appears to be swollen as a result of the treatment.  We are concentrating on praying that her liver and kidneys make it through this ordeal with minimal to no damage.  There is still positive indications that Lydia's new stem cells are "grafting" and growing properly.  However, once again, nothing is certain at this point until we obtain the bone marrow test later this month.

We have discovered that "uncertainty" is the best word to describe leukemia and Lydia's journey.   One day we may receive very positive news and the next day we worry about Lydia's vital organs and whether they are responding properly.  We all have to deal with uncertainty and the varying degrees of stress it places on us.  When this journey with Lydia began, we selected Joshua 1:9 as a theme verse to continually reflect on and provide us strength.  It is particularly comforting this evening as we pray for reduced swelling in Lydia's liver and the continual functioning of her kidneys: "Be strong and courageous.  Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go."  Joshua 1:9.

Turning the Corner

We have good news to share! Lydia has been feeling and doing much better over the past two days. It appears that the severe sickness of the post-transplant period is now behind her. Lydia's mucositis has drastically improved to the point where she is now using her voice again and the doctors have reduced the morphine dose. The mouth sores are also healing and we anticipate that she will be ready for solid foods again soon. Judging from the attached picture taken late this afternoon, we think our beautiful child looks great considering the trauma her body has endured over the past several weeks.

Most importantly, Lydia's blood counts are slowly rising! Although we will not have positive medical evidence until a bone marrow aspiration is performed later this month, the doctors suspect that the donor's cells are properly grafting and reproducing in Lydia's body. So tonight we will be saying a prayer of thankfulness to God for providing these positive signs and giving Lydia increased comfort!

Oh give thanks unto the Lord, for He is good; His Love endures forever. Psalm 107:1

Sleeping Beauty

There are so many reasons to love this picture that was taken of Lydia this afternoon:  (1) she looks so beautiful and content; (2) she continues to enjoy daily moments of peaceful rest; (3) her facial rash is clearing; (4) her weight is being maintained; (5) she is another day closer to coming home; (6) she remains cancer free; and (7) God has given her to us!

Lydia, you are such a bright spot in our lives.  We are so grateful to have you!  We continue to pray for you!  We are always by your side!  Sleep well beautiful child.

One Week Post Transplant

Lydia is now exactly one week post transplant.  As predicted, this week was difficult.  Lydia has dealt with an itchy skin rash on her face that is slowly getting better.  She also has an upset stomach that effects her appetite. Most difficult is the mucositis which has caused some significant congestion requiring suction and occasional morphine to make Lydia comfortable.

However, the doctors have assured us that these symptoms are normal following transplant and that Lydia is actually doing quite well for a child in her condition.  They expect that Lydia should start feeling better within the next few days.  This really sick period typically lasts approximately  7-10 days post transplant.

Lydia still finds time to play when she is feeling better. The picture accompanying this blog entry was taken just this afternoon and shows Lydia enjoying time with her toys.  She of course is confined to her purified room for the time being.  We have noticed that Lydia is getting stronger in her arms.  We are fairly certain that she would be crawling out of the hospital room if she weren't hooked up to her medication tower. :)

Despite some difficult days this week, we know that the Lord is still protecting Lydia and providing Angela with the necessary strength to take care of her.  We remain hopeful that the Lord will restore Lydia to health and heal all of her wounds.  

But I will restore you to health
    and heal your wounds,’
declares the Lord...

                           Jeremiah 30:17

Lydia's Music Therapy

Lydia took advantage of the hospital's music therapy this afternoon.  She enjoyed being serenaded by the guitar and making music of her own by banging on the tambourine.  Lydia also enjoyed the visit by her brothers Caleb and Daniel.  There is no doubt that Lydia knows each of her family members and gets particularly excited when they visit.  We are told that leukemia babies, who have the loving support and constant attention of family members during recovery, do especially well.  So we continue to ensure that Lydia has as much attention and love as possible.
 

Lydia's physical condition remains uncomfortable but certainly not critical.  She is still dealing with a facial rash, vomiting, and mucositis - all common effects of chemotherapy treatment.  We ask that you continue to pray for Lydia.  Specifically that her side effects remain manageable and that her new stem cells begin to graft properly in her bone marrow.  Happy Fourth of July!

Post Transplant - Day Three

It is now three days after Lydia's transplant. As expected, she is beginning to feel the side effects of the intense chemotherapy. According to the doctors, this is typical and will continue for another week or so. This is the roughest stretch for little Lydia thus far. Her stomach is upset and she is vomiting more than usual. Lydia has also developed a mild case of mucositis which is an inflammation of the mucous membranes that results in coughing and congestion. This condition is fairly common for transplant patients and we are told that it will improve. As you can see from the photo, Lydia is also hooked up to numerous medicines and nutritional fluids. It is difficult to see her in this condition.

We are attempting to stay focused on the big picture and the doctor's assurance that Lydia must go through this rough patch in order to get better. Lydia is a strong little girl. She still manages to smile occasionally despite her uncomfortable condition. This smile provides us all Hope that Lydia is another day closer to coming home!

A New Start

It is now shortly after noon and Lydia is in the middle of receiving the bone marrow from her sibling donor.  This photo shows the actual bone marrow running into our precious child during her morning nap.  Our brave little donor is also awake from surgery and doing well.  The bone marrow was extracted and given to the lab for processing at around 9:00 am this morning.  It begin dripping into Lydia by 10:40 am. The entire transfer should be complete around 1:40 pm.

Team of Drs. hanging the bag.

Lydia has been blessed with a new start and opportunity to produce cells that are not cancerous.  Although this transplant is going smoothly, Lydia still faces challenges in the days and weeks ahead.  In order to be considered a successful transplant, these new cells must begin to graft and produce healthy cells within Lydia.  This process typically begins within two weeks of the transplant.

There have been many blessings in this journey thus far and today is no exception.  We continue to be thankful for God's grace and peace through this process.  We are filled with joy that the initial step is complete and journey is underway. Our prayers are now focused on keeping Lydia safe from serious infection and for the grafting process to run properly.

 

I'm Ready!

The much anticipated bone marrow transplant day is tomorrow and the doctors have given the green light.  The sibling donor will be at the hospital very early in the morning for the bone marrow aspiration - a procedure that takes around an hour. The donor will be completely sedated as the cells are extracted from the hip area. The stems cells will then be quickly processed and placed in Lydia before noon.

We ask again for your prayers.  Please pray for wisdom and steady hands for the doctors. Please pray that Lydia's body will not reject the cells and that she is protected from infection and viruses while her system is down.  Please pray for the sibling donor that the procedure goes well and there is minimal pain.  Please pray for mom and dad that they have the emotional strength to be supportive parents.  Peace be with you!

Children of Kenya's Mathare Slums - Praying for Lydia

An amazing thing happened this morning!  We received an email from Kenya where our church mission team is currently spreading the Gospel to the poor families living in the Mathare Slums.  The children there have very, very little.  Most have experienced death of loved ones through disease or civil strife.  Their homes are shacks with no stable electricity or running water.  Food and nourishment is not always plentiful.  The lives of these poor people are more difficult than the life many of us are fortunate enough to experience in the comfortable confines of our communities.

But we have a very important common bond with some of these children and that is Hope through Jesus Christ. These children are being ministered to by our missionary team.  They are told that Jesus loves them very much and faith in Him means Hope no matter how difficult their circumstances. 

Early today, the Mathare children kept asking one of the team members, Jamie Eisnor, about the Lydia bracelet on his wrist.  Jamie used this inquiry to speak to the Mathare children about Lydia Kovac's leukemia story and how, on the other side of the world, a little baby from an entirely different culture is also experiencing pain and requiring the peaceful protection of a loving God.  After the story was told, Jamie gathered the 20 children closely and they prayed for Lydia.  Today, we thank the children of Kenya's Mathare Slums for listening patiently to Lydia's leukemia story and expressing the desire to pray for her.  We too will keep these little children in our hearts and prayers. 

Doing Well - Post Surgery

Lydia made it through surgery this morning just fine.  She was in the operating room for a little over an hour and comfortably recovering in Angela's arms a short time later.  This picture was taken at approximately 1:00 pm as the anesthesia was wearing off.  We are always comforted when Lydia smiles, once again, we know that God has protected her and provided joy despite the uncomfortable morning procedure.

The surgeons had to replace Lydia's broviac line which was clogged.  As you can see from the picture below, a broviac line is a critical medical tube that allows for fluids and medications to flow directly into Lydia's major artery.  She now has two broviac lines on both sides of her chest.  These lines will remain in Lydia for the duration of her treatment. 

Lydia's chemotherapy resumes this afternoon around 2:00 p.m. - while she is napping.  After today, only two more chemo rounds remain. Aside from some minor vomitting, which is controlled by medications, Lydia has been doing great.  The doctors do indicate that additional side effects may occur after the chemotherapy is completely finished.  But for now, Lydia is strong!  

Thanks for your prayers this morning.  

Broviac Line

Surgery

This is Lydia just prior to surgery this morning to replace her broviac line.  As you can see, this beautiful child continues to smile and shine under God's protection and with the thoughts and prayers from you!  Thank you all for supporting Lydia and our family!

Still Smiling

Lydia has just completed her fourth full day of chemotherapy and she is now more than half way through this seven day course.  God has blessed Lydia with a continued happiness and minimal side effects thus far.  She has maintained a typical diet of nursing and solid foods. Lydia continues to play happily and with energy!

Lydia does have a surgical procedure scheduled on Monday.  One of her broviac lines, which is implanted in her chest and runs into a major artery, has clogged.  This line is used to insert medication and fluids so Lydia does not have to be constantly poked with needles.  The surgeons will have to perform a relatively routine procedure to insert a new line.  Although we do not anticipate any problems, our little baby will still be sedated and have to endure yet another evasive procedure.  We ask that you continue to pray for Lydia and especially that this procedure goes well.

This week is very important.  Lydia's bone marrow will be eliminated by the chemo in preparation for transplant.  The chemo ends on Wednesday and Lydia will be able to rest one day.  On Friday the sibling donor will be sedated and have bone marrow extracted during a morning surgical procedure.  In the afternoon, the donor's bone marrow stem cells will drip into Lydia's system through an IV bag and broviac line.  We then wait and pray that these stem cells "graft" properly in Lydia's system and produce healthy, non-cancerous cells.  We pray "without ceasing" that the Lord continues to strengthen Lydia, Angela, and family.