Quick Note

Day 1

Just a quick note to let you all know that Day 1 went much better than expected.  Lydia played all day!   She was bubbly and full of joy.  The only new side effect was a short lived rash.  It is too soon to tell if it is Graft Verses Host Disease (GVHD).  I sure hope not.  Our doctor was pleasantly surprised by how well Lydia is feeling and that she didn’t have a fever. 

Thank you God for another great day!  Treasure each moment.  They are worth it. 

 

Transplant Eve

Day -1

There is such a since of accomplishment when something is completed.  Right now Lydia is completing her eighth and final Total Body Irradiation (TBI).  I am overjoyed that it is now over, but will miss the people at the University of Washington that so gently led us by the hand on this part of the journey. 

Yesterday, we had a bit of a scare when Lydia was being sedated.  She coughed, then held her breath as it was being administered.  She turned blue as I was laying her on radiation bed.  I got out of the way as fast as I could so that the doctor and nurses could do what needed to be done to keep her breathing.  Very quickly she was breathing and received her treatment.  Since then she has had no problems being sedated.

The mucusitis has now caught up with her.  Mucusitis was caused by the chemo and TBI that kills her current bone marrow.  They also kill other fast dividing cells, especially in the GI tract.  It is very painful so she is being fed intravenously with Total Parenteral Nutrition (TPN).  She still can take a bottle, but she has a hard time with it and mostly refuses it.  She is on a lot of pain medication, but is able to get up and play in her exersauser.  She is a mighty warrior and I am so thankful for her sweet spirit.

Tomorrow is the big day.  She will receive her umbilical cord blood, stem cell transplant, which will replace her bone marrow.  This will happen sometime after noon pacific standard time.  It is a really easy process…It will work just like a blood transfusion over the coarse of about 30 minutes.  No surgery required.  The cells know where to go.  I wonder how they know where to go! 

Then we wait.  We wait for the cells to engraft and start making the donor’s blood.  This will take weeks and in the mean time Lydia will be exposed to possible infection and need many transfusions.  The mucusitis should go away in a couple of weeks on its own.  The mucusitis is the only thing that the doctors knew that Lydia would have as a major source of pain, everything else is a waiting game…but God knows what is to come.  I am thankful for that.  Lydia is His and I am so thankful that he shares her with me!

Please keep her in your prayers.  I am praying that this new marrow would be a direct reflection of Christ’s marrow and that He will heal her completely through it.

Thanks for all of the prayers and comments that you have left.  They mean so much.

 

One Big Nutshell

As the countdown to transplant gets closer, my heart is racing faster.  Lydia is still full of peace and when I look at her the peace of our sweet Lord flows out to me.  I am continually putting her back into His lap and know that it is He who is the giver of life and that He loves my baby girl. 

It is day -11, that is 11 days until transplant.  We are still outpatient, loving the people around us and the sunlight outside.  It is absolutely gorgeous outside.  The view from our room at the Ronald McDonald House is so lovely.  It is a park area, with a trail, some picnic tables, lots of greenery, and a road in the background.  Lydia has had many appointments, at many different places.  Most of which, I am retold the same information…the worse case scenarios for the the short term and the long term.   In the midst of all of this darkness, the heaviness which surrounds the future, there is a pinhole of light.  The light of hope.  It sometimes looks so small to this mama who wants to know that her precious baby will be cured and healthy.  I know that God is making her whole and into the person He created her to be.  I am so thankful for that.  Please pray that I will continue to trust Him with her.  I know that she is even more precious to God than to me.

So here are the details.  Thursday Lydia is admitted to the hospital to begin the conditioning for transplant.  This will include 3 days of chemotherapy and 4 days of total body irradiation.  Then she will have one day off.  On May 16th she will receive her new bone marrow, actually she will receive umbilical stem cells that will enter into her bone marrow.  They expect Mat 18th to be really rough, most likely she will stop eating and be fed through her blood stream for a period of time.  This is when the most drastic pain is expected.  After about a month, the new bone  marrow is expected to engraft and begin making new blood (the donors blood)  soon after hopefully she will have had no infection and will be able to move to the transplant apartments at the Ronald McDonald house.  By day +100 (100 days after transplant) she will have received a multitude of transfusions and hopefully her bodies immunities will be halfway to normal.  They expect that it could be a full two years after transplant for her body to have a full immune system.

So thats it in a nutshell.  Thank you for your continued prayer.  I cherish them.  I live on them.  They are the manna God has provided. 

I was contacted by a mother in Connecticut who’s three month old, Evan, was just diagnosed.  Please pray for there baby boy and family as well.  They have a long road ahead of them and are desperate for prayer as well.

Thanks,

Liz (Lydia’s mom)

 

Where Everybody Knows Your Name

Seattle is a very familiar place.  You know when you meet someone on the street that looks familiar or reminds you of someone?  That is how Seattle feels…the people, the places, the dogs.  It is really nice.   

We are in the hospital right now.  Lydia checked in Sunday night so that she could get multiple tests run on Monday, and only have to be sedated once.  Then while she was here they decided to keep her one more day to give her the intrathecal chemotherapy.  A plan was made on how to give her chemo into her spinal fluid and it went well!  She had to be sedated and a doctor from radiology tapped her under floroscopy lights.  When  I left her, for the procedure, I got a little nervous as I walked out the door, but then I heard the OR doctors playing “Sweet Home Alabama” and I knew everything was going to be just fine.  When the procedure was finished Lydia was wheeled up to our room.  She was sitting up cooing, smiling, and playing with the transporter.  She looked like a princess entertaining her guests.  She is so amazing! 

Later this evening she had a diffent kind of infusion called IVIG.  She finished it late this evening and is now sleeping and will be released in the morning. 

I can’t wait to get back to the Ronald McDonald House.  Lydia and I got a “pass” Monday night and got to go home to the RMDHouse.  I couldn’t wait to get there to my space.  It was surprising to me that I felt so bonded to it in such a short period of time.  There are amazing kids and families there.  I highly recommend spending some time or volunteering at your local RMDHouse and getting to know some amazing fighters personally. 

Children’s Hospital of Seattle is wonderful.  The nurses are so compassionate and loving.  When we arrived on Sunday I was so homesick and missed MY nurses back home so much.  Thankfully the nurses here are wonderful too!  They made us feel like we are at home.

I want to thank all of you for the contacts that we have in Seattle.  They are such great people and remind me of home.  In fact, we have multiple contacts here at the hospital that I had met via email prior to Lydia’s admission.  God has been so faithful and ever present.

I almost forgot some very important news, Lydia’s bone marrow test came back clean!  No signs of leukemia.  She is still in remission.  This is a HUGE blessing.  Infant leukemia attacks so quickly.  Relapse happens often for these babies, so please keep praying!

 

Lots and Lots of Wrinkles

I have never been great at ironing.  Now that we are so close to leaving for Seattle and there are a lot of details to be ironed out.  I am not really sure where to start.  I know God will get it all together while leading me to put one foot in front of the other.

I took Lydia to clinic this morning.  She was not scheduled to go back until Wednesday.  When she got up this morning she had some swelling (like a bump) on her head, where the Ommaya reservoir use to be.  I took her in and had her checked out.  The doctor thinks that everything is allright for now.  He said that there was a remote possibility that a problem could exist, but for now it is a wait and see game.  Please pray that she has no more problems with her head.  Other than that, she has been great.  I am amazed everyday!

If anyone has any frequent flyer miles to spare we sure could use some.  We have a friend who is donating us some, but David and the boys will be traveling back and forth so much, we could use quite a few more.  You can email me directly at leapnlizzie@bellsouth.net.  Thanks. 

Please take a minute to sign our guestbook.  I sure would appreciate it.

Thanks,
Liz

 

No Place Like Home

Spingtime in Alabama is the best.  It is gorgeous here.  Everything is blooming everywhere.  Lydia is doing great.  I took her to clinic yesterday and everything was great.  She has completely recovered from that last round of chemo.  She didn’t have any problems this time.  Praise God!!! 

Anyway, her counts are great so we have spent a little bit of time in the front yard and have gone out on multiple errands (my mom stayed in the car with Miss Lydia while the boys and I got out).  It has been great!    Lydia is getting so much stronger.  She is amazing and so good natured.  She giggles so much of the time.  It warms my heart.

We aren’t scheduled to go back to clinic until Wednesday.  We are still scheduled to be in Seattle April 22.  I haven’t started packing, organizing or anything.  We are going to stay at the Ronald McDonald house.  I am still looking for a place for my sister to stay when she comes and visits. 

I hope you are enjoying God’s artwork outside.  I am so thankful that He shared it with us all.  Thanks for your continued prayers.  It means more to us than you can imagine.

Please take a moment to sign our guestbook.  We really appreciate it.

 

The Normal Side of Life

We have been home for a full week and it has been great. Lydia doesn’t go back to clinic until Wednesday.  It looks like we may make without any ER visits or anything.  She is getting stronger everyday.  It is absolutely amazing.  I have had so much fun with the boys.  We have played and played.  I have even gotten out with them a couple of times.  All very normal times.  It feels great being normal. 

I have also noticed that sometimes while being “normal” is also a bit on the sad side.  Everything is very intense, because I realize that nothing is really normal, you know?  It was great seeing many of you at church on Sunday.

Thanks for your continued prayers.  I am praying that Lydia’s central line (tube for drawing blood so she doesn’t have to get stuck with a needle) will start acting right.  I don’t want to see her having to have another surgery if it doesn’t.

 

Pretty in Pink

My baby girl is pink again.  She is so pretty in pink.  She had a red blood transfusion and pinked right up.  She had so much energy after it and she ate a whole jar of baby food tonight.  Usually she just eats a little bit out of the jar.  My motivation for spoon feeding her solids has been to give her the skills to eat solids, not necessarily to feed her, but now it looks like I might be able to do both!

Plans for Seattle are really coming together.  God is so faithful.  Yesterday, I started getting weepy again about what Lydia will have to endure.  She is SO amazing.  God has gifted her with so much strength.  I was speaking with our fabulous oncologist about the future and all the possibilities.  She just reminded me what God has brought Lydia through.  She thought back to the night Lydia was diagnosed and said that she never would have imagined that we would be sitting here now having the conversation that we are having about her future.  God has brought her so far.  I am so thankful for His presence.  For His peace.  For bringing Lydia this far. 

Please take a moment to sign our guestbook.  It means a lot.

 

We Have a Date

We are home!  We got home Saturday afternoon, just in time for Easter.  Saturday night David and I went to our church’s Easter service.  They had two this year.  Jeanette and Sally watched all three kids together.  Then Sunday morning we woke up and had a marvelous Easter all together as a family.  It was wonderful.

I found out that Lydia’s first appoinment in Seattle is on April 22.  Wow.  It is really happening.  Now we are working on the details.  I still don’t know what is going to happen with our family…who’s going, who’s coming.  We need a lot of prayer for a lot of details.

Lydia is doing great!  She just thrives being at home.  I can tell that she has an upset tummy from the methotrexate.  Thankfully she is not bleeding at all.  I pray that it doesn’t start again.  She will probably get a blood transfusion on Wednesday.  I thought she would get one yesterday, but her levels had not dropped as low as I had guessed…she looks very pale. 

I am so thankful for your hospitality, love, and prayers.  I praise God for His goodness and provisions.  I would love to hear from you.  Please take time to sign our guestbook.

Liz

 

Last Chemo Before Seattle…Finally!

Lydia was finally admitted to Children’s Hospital for her chemotherapy today.  Her abdominal bleeding hasn’t cleared up completely, but it is better.  There is greater risk if she doesn’t get treatment in a timely manner.  So here we are.  We will be here for 3 to 5 days.  Please pray that this round of Methotrexate will not give her any worse mucositis.  I am really praying that her GI will be healed completely and that these poisons will not hurt her…and that she stays in remission, of course. 

Thank you so much for your prayers.  I personally can feel them.  I have such a sweet peace around me.  Our household has been hit with a cold bug.  David and I have both been to the doctor and have tested negative to the flu and strep.  Lydia has good counts right now and hopefully they won’t drop with this round of chemo. 

When we got to 4 Tower this afternoon, we were greeted by our friend Amy Vandiver, Abby’s mother.  Abby is in great pain tonight and needs much prayer.  They are worried about an infection.  Also, our friend, Dr. Kimberly Ward, has recently gotten out of an extended time in the hospital.  She is having a lot of testing done.  She is an amazing woman who is getting married next month.  Please join me praying for complete healing for both of these great females. 

I appreciate you all walking with me along this enormously long road.  Once Lydia finishes her chemo the count down to Seattle will actually begin.  Please take a moment to sign our guestbook.  It means so much to us.

Thanks,

Liz