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 :)