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!