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!