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!