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!