Thursday, July 31, 2008
The conversation with Ethan's transplant doctor went well. She repeated several times how she battled in her mind for several hours on the absolute best treatment protocol we should follow for Ethan that would best ensure a decreased chance of relapse and the most effective way to rid him of all the current cancer cells that are in his body. I was comforted by her diligence as I knew God had been giving her the wisdom she needed to truly help our little boy. The final decision was made to include radiation as a part of Ethan's treatment plan. We knew back in May that this could be a possibility, though we were hoping to avoid it. However, with his enlarged spleen and liver, chemotherapy alone would not fully kill off all the dormant cancer cells and if any should in fact linger the chance of Ethan relapsing in a few months are that much higher. With radiation, the likelihood of fully attacking those dormant cancer cells hiding in the spleen and liver and any other areas of Ethan's body are extremely better, and with a much higher percentage than chemotherapy alone. We accept this decision, and agree that it is really the only option for him, though it was hard to hear at first all the long term side effects that could affect Ethan in the future....
We knew the possibility of him becoming sterile due to the radiation. However, some experts believe that this is more likely to happen in older children than in babies. At Ethan's age, his "reproductive system" isn't fully matured/developed and therefore it isn't a guarantee that babies like him who endure radiation would become sterile. And with the advances of infertility already made available, the expectation is that in the years to come they'd be able to do much more to help couples overcome such an obstacle.
Kasey, your faith should not stand in the wisdom of men, but in the power of God.
Radiation also stunts growth and has the potential to create mild learning disabilities. We have no reason to believe that with giving Ethan extra attention in his early years, any learning disabilities couldn't be resolved. As far as the stunted growth is concerned, they estimate Ethan will be somewhere between 5 feet and 5 feet 5 inches tall due to his radiation treatment. At first, I don't think Adam and I were quite sure how to process hearing about this part. Not that his being smaller than he would have probably been (his daddy is 6'2!) is a big deal in the grand scheme of things, it's moreso that the radiation doctor initially said "he'd hopefully be in the 5 foot range". As if to imply that he could end up being shorter than 5 feet. She quickly told us that there's no chance he'd be only 3 or 4 feet tall as she saw the panic fall on our faces. They said we have every reason to believe he'd be within an acceptably normal range, but he just might not be as tall as he could've been. I think Adam was secretly hoping to have dunk competitions with Ethan when he's older, so I will secretly be praying that he blows all the statistics away and hits an unbelievable growth spurt when he hits puberty!
Kasey, your faith should not stand in the wisdom of men, but in the power of God.
Radiation can also cause cataracts to develop in children. Often times, cataracts are in places that do not obstruct vision, and therefore do not always require surgery.
Kasey, your faith should not stand in the wisdom of men, but in the power of God.
Those are some of the radiation details. If I explained every piece of information of every step involved, this post would go one for about several days. So, I'll skip ahead to the layout of the treatment plan.
1. This coming Monday, we get admitted in the afternoon. Nothing big happens on this day, except that Ethan will get a transfusion of platelets as they have dropped in number this last week.
2. Tuesday, he will start 2 rounds of head-to-toe radiation (lasting about 15 minutes each, one in the morning and one in the afternoon) and this will continue through Friday. Please be in prayer that Ethan will not have to have anesthia for these sessions. They are going to try to do it without it, and the prayer is that he does well to be content to lay down by himself without too much movement, because otherwise, if he has to get the anesthesia, he won't be able to eat for hours and hours before-hand... and that is just awful for a baby, because they don't understand, are very hungry, and get quite angry. And for mom, it's just miserable!
3. He will start chemo (and other medications) on Saturday and this will continue until Monday (august 11th).
4. And that next day, Tuesday, August 12th, is the day he will receive the cord blood transplant. I'm not sure if I've ever actually explained to those of you who may not know what a bone marrow or cord blood transplant is.... no actual surgery is involved. In Ethan's case, he is getting a cord blood transplant. The blood is from an umbilical cord that was stored in a cord blood registry at the time of a child's birth. This blood is just saved until it should ever need to be used by someone. The donor cells are in the form of blood and the "transplant" is actually just a blood transfusion. The new cells then filter through the body and know exactly where they need to go in order to start growing new cells in the bone (in the marrow). The transplant itself isn't a problematic scenario. It's the conditioning treatment he gets before the transplant (as noted above) that cause the most harm to Ethan's body as it has to essentially "kill off" Ethan's own cells and bring him to a place of complete irradiation, so that the new cells (the donor cells) have an opportunity to grow and replace his blood cells - which have the cancer growing. The weeks following the transplant are crucial as well, as it takes time for the new donor cells to engraft into Ethan's body and therefore he's at various stages of risk until that time.
Whew.... that's a lot of information, huh? And trust me, that's the simplified version! You'd not believe all the detail involved in every single step of this whole process. I could go on, but this is at least gives you an idea.
The first (of many) prayer requests I have for you right now is that Ethan would not need anesthesia for his radiation treatments. Ideally, he'd be napping right at that time and it wouldn't be an issue. But he's not on the same schedule each day. But, if he can just remain relatively calm even if he is awake, for about 15 minutes, then I don't think there'd be a problem. Please also pray for his liver and spleen. Pray for protection of his liver throughout this entire process and with regard to his spleen, pray that it shrinks to normal size.
Oh, and one last thing. They are not using the 5/6 cord blood match they had found. After further testing was done, they found it was not as good of a match as they were told by the out of state institute. Therefore, we will be going with the 4 out of 6 match for his transplant. Obviously, the ideal transplant is a 6 out of 6 match. But Ethan's genetic makeup is quite complicated (thanks to his mommy and daddy) and therefore finding a perfect match for him has been near impossible. However, the doctor feels extremely confident in the 4/6 match. She said it is a VERY large cell dose, which means there's more blood to give Ethan at his transplant and increases his chances that everything will "take". In fact, she said that she'd prefer a 4/6 match with a large cell dose than a 5/6 match with a lower cell dose. Overall, she feels really comfortable with it and so do we.
There is so much more I want to say, but my fingers are about to fall off and I'm sure your eyes are about to pop out of your head from reading so much. So... until tomorrow...
Wednesday, July 30, 2008
In the meantime, please be in prayer for us today. We will be leaving for Boston in one hour (6 AM eastern time) and we will be there most of the day. Today we learn/discuss what treatment plan will be used for Ethan over the next several weeks and months. Please be in prayer that the discussion is productive and that we feel we have all of our questions answered. Please pray that the doctor has the wisdom she will need as she determines the best & appropriate steps for our little boy. Pray that Ethan is content as we try to get a lot done while we are there. Please also pray for a safe trip!
Thank you for your prayers for the tests and exams he's had to endure the last few days. Some were annoying to him, but for the most part he did such a great job with each one. I am so very, very proud to call him mine. All of the tests, so far, have come back just fine. They are really meant to serve as a baseline to compare to down the road as some of the medications Ethan will be on could cause complications with his hearing/vision/heart/kidneys/lungs. So these tests will allow them to see what each area was like before his transplant. As a side note, I remember my early weeks of prayer over Ethan's little body when he was first born, were specifically over his ears, eyes, lungs, heart, brain and his organs... and I didn't even know he was sick with ANY disease... so I am not worried that those areas will be impacted negatively as I truly believe those prayers were not in vain!
After today, there are only 4 full days before we leave for Boston for Ethan's admission and treatment process... thank you in advance for going with us in prayer.
I will lift up my eyes to the hills—From whence comes my help? My help comes from the LORD, Who made heaven and earth.
Tuesday, July 29, 2008
This trial could have been so much worse.
Ethan's illness could have been in the form of so many different things... a more deforming or damaging cancer... or a variety of syndromes that could have left him permanently disabled... or a disease that would never give him the opportunity of a normal life.
And as his parents, Adam and I would have to come to terms with the end of certain dreams and hopes for our little boy and realize that there would need to be different dreams for him. And I'm crying as I write this because I feel so extremely undeserving of the mercy He has shown us.
It's only leukemia.
Ethan's life has already been so normal despite his particular cancer. Our lives as a family have been so normal together. We are able to hold him, hug him, tickle him, feed him, play with him, watch him roll over and grab toys... We've made so many fun memories already and if you look at most of our family pictures or videos, you'd never even know anything was wrong with our little boy. So we can't take Ethan out in public places right now.... that seems so minuscule compared to what other families have to endure with their child's sickness.
All along we've been mentally preparing that we will be dealing with Ethan's treatments and various details for probably the next year and we know that these next many months may be really difficult on us, but I am humbled and quieted and have tears that won't stop as I imagine telling that to a mother who's child is permanently blind and without functioning limbs that will bind that child to a wheel chair for the rest of his/her life. Or the mom of a child who's brain damage is so great that her little one will never know how to tie his own shoes, say "mama or dada" or even be able to feed himself. I'm sure if the moms of either of those scenarios thought her life and her child's life could go back to "normal" after a year, she'd take it with EXTREME GRATITUDE.
And that's where I am today. I am overcome with extreme gratitude and gut-wrenching unworthiness that God would show us His mercy and love in the ways He has with this trial we are facing. I have every reason to believe that this cancer will not define Ethan's life in a way that he will be limited by it. I truly believe he will grow up and be as normal as all of his friends. And I'm so thankful for even that possibility. So very, very thankful. My heart is breaking as I think of the thousands of other families who's suffering is greater than ours. I do not take any of this lightly and I do not mean to imply God's grace and love isn't sufficient for everyone. It is simply that He has revealed Himself to me, in a new way, and in seeing and understanding Him in this light... well, I'm at a complete loss to process it all... but completely aware of my revived thankfulness to my Lord.
Lord, accept these tears as my only way to express to you how unbelievably grateful I am that this is only leukemia. And that you have allowed us a beautiful and healthy little boy in every other way. I do not feel worthy that You would speak to me in the ways that you have the last several weeks and months. I pray your strength, peace and healing to all the families and children you brought across my path.
Dear friend, from my heart, let me encourage you as I've been encouraged.... be grateful for all that is in your life. Even with our most heartbreaking/disappointing/stressful of situations, there is someone else out there in the world who's situation is worse than yours... and if given the opportunity, would probably be willing to trade experiences with you in an instant.
Lord, be with us all. Give us the grace to live out the life you have planned for us. And give us the strength to live it with joy.
Through the LORD’s mercies we are not consumed, because His compassions fail not. They are new every morning; Great is Your faithfulness.
Sunday, July 27, 2008
1. Thank you to sweet Hollie Anderson for wanting to give me a blog "makeover". Many people charge for this kind of service, and she reached out to me a few days ago asking if she could design a new look for me for free! This gesture was extremely touching in many ways... For one, Hollie and I have never actually met (though we've realized we grew up very close to each other back in Texas!), but she found our site a few months ago and has followed our story and has prayed diligently for our family. Her friendship has become very special to me. Also, this blog is my connection to the "outside world" and has become a place in which I allow myself to be fully open and expressive... and in return friends, family and strangers pray for us. It's a wonderful thing to have the site more personalized and created for me in this way. Oh! And she did a sweet favor for me by incorporating the color orange... orange is the color for leukemia awareness (just as pink is for breast cancer). Needless to say, I'm extremely thankful for all of her work. So thank you again, Hollie for your creative kindness!
2. Next, I want to say thank you to "5 minutes for moms". They've added a link to our blog on their "prayers for children" website! If you scroll down on the right hand side of my webpage here, you can see a pink box that says FAITHFUL PRAYERS FOR OUR CHILDREN. If you click on that box, you will be brought to a website with several children who are in need of prayer. ETHAN is on that list and you can see his picture. If you click on any child on that page, you will be brought to their particular website. Such a huge encouragement to me that Ethan's situation could be spread to even more people who might feel led to pray for him. I am overcome with gratitude that they would include our little boy.
Thank you, Lord for the kindness you continue to show us through others...
Friday, July 25, 2008
The tests/exams are as follows:
- An ultrasound of his heart
- A retinal exam of both eyes
- A hearing test/screening
- A body scan/MRI
- Urine/kidney functionality test - this will be done in Boston
So far, he has had his heart and eyes check and everything looked perfectly healthy and normal with each. He is scheduled to have his hearing test on Monday, his MRI on Tuesday, Adam and I (with Ethan) go to Boston for his pre-admission/tour/information on Wednesday, come back home that same day.... then we may have one more hospital visit in Connecticut for final sign off Thursday or Friday, then we leave for Boston again for Ethan's final admission early that next Monday morning.
I still haven't fully processed that next week is my last week here at home for a very long time. And as you can see, it is a VERY busy week. I feel as thought I'm not ready... but I'm also anxious to just go and get this all over with...
Thank you so much for praying. This is such a strange time in our lives.
I would like to ask for praying for Ethan's remaining test/examinations. He has done very well with the tests so far, and the results have been perfect. Please pray that the remaining tests can be done easily and that Ethan cooperates as well as he has been. I'm slightly concerned about his ability to sit still for 45 minutes during the body scan on Tuesday, so pray for that specifically (I'm not sure of all the details yet, except that I know he will get injected with some dye then we will wait for 2 hours, then he will have a 45 minute scan).
Daniel 6:26-27 ....For He is the living God, And steadfast forever.... He delivers and rescues, and He works signs and wonders in heaven and on earth...
Thursday, July 24, 2008
I was thinking about that this morning. How much I really enjoy a good storm. I don't like them to cause any harm to anyone or anything, but I have grown up really appreciating the intensity they bring, and no matter how intense they are always followed by stillness and calm... even sunshine. I'm sure the irony is as obvious to you as it became to me this morning. I am in the middle of a storm. Adam and I both are. But we're not just looking out a big window, we are physically, emotionally, and spiritually in the middle of it. It's powerful, fierce, and we do not know how long it will last. But of all the actual storms I've witnessed in my life, even the ones that caused my sister and I to crawl in a bathtub with pillows over our head in case the tornado came our way.... every single one of them came to an end. Some of them ended just as quickly as they started. Some lasted a little longer. But all of them passed. The lightening went away. The winds were still. The thunder was silenced. And the clouds gave way to the sun....
Wednesday, July 23, 2008
Just a few fun pictures to mark Ethan's 6 month "birthday"! As you can see, he really likes his new toy "Spot". They have a lot in common... they are both soft and cuddly! Ethan also LOVES it when his daddy pushes him high into the air. He gets such a smile and giggles so loud... it's adorable!
Ethan has been doing extremely well. He hasn't had to have any transfusions since his last round of chemo ended a few weeks ago. But in an effort to keep his cancer stable until his transplant (which is in about 12 days!!!) we have started giving him chemo here at home. The home care nurse came yesterday to walk me through the process. It's fairly simple. I have a syringe full of chemo and I push a little at a time through his central line over the course of 5 minutes. A few other details, and then we're done until the next day. I will give him the chemo every day for 10 days. Then he'll have a couple of days off, then it's on to Boston for his transplant. Did I mention it's only about 12 days away? I really can't believe it's almost time. I still have difficulty processing that I will be away from my home... away from everything... for at least 2 months. Imagine trying to pack.... oh well. I'm not going to go follow that train of thought with you now, but I reserve the right to come back to this mild moment of panic at a later date. Right now, I want to celebrate our little Ethan's 6 months of life. He is so much fun!
Also, I wanted to tell you what a wonderful day we had yesterday. A dear friend - who also happens to be one of Ethan's nurses - felt strongly that Ethan should have a professional portrait done before we leave for his transplant. I've wanted this for him for a long time, but since he can't be in public places, I thought it wasn't possible. This angel however, sought to make it happen! With her help, and the unexpected generosity of the portrait studio's manager (thank you, Joel!), they arranged for Ethan to have professional pictures made in this adorable studio and basically reserved a blocked of time for us in a way that there'd be no other people around - therefore keeping Ethan away from being in contact with any germs, etc. It was so wonderful! AND, to top it off, the manger of the studio (who was aware of Ethan's story and has been praying for him), wanted to GIVE us the pictures for free. So, I was able to pick a couple of pictures of Ethan and a couple pictures of me and Ethan together without even knowing what they might have cost.... it was beyond kind.... and a perfect experience for me. I have attached a couple of the fun poses we did (my mom tried to get a few shots on my camera... pay no mind to how weird the lighting is from her angle... I assure you I don't have orange hair), but the final ones I chose that the actual photographer made were simply amazing. I'll see if I can find a way to get them here online for you all to see. Oh, and Ethan was also able to participate in a type of "cutest baby/kid" contest for a Disney promotion. The prize also includes a trip to Disney World. They printed off a really cute picture of him and put in on the wall with the other contestants. It was incredible to see his picture up there! What a precious day. Thank you so very much to MotoPhoto and thank you Sweet Sarah!
Monday, July 21, 2008
Having a child with cancer opens certain kinds of doors. You, as a parent, are officially a part of any and all cancer organizations that are out there - which can be a good thing, because some help with certain funding, awareness activities, wonderful programs for children and families - but it also means you get a lot of reading materials in the mail! We recently received a large packet in the mail from one of the largest leukemia foundations/societies in the United States. This bundle of information included a nifty little binder in which we can keep all of Ethan's paper work in one place, a nice welcome letter, some funding information, and.... a three page excerpt on JMML. Now, if you've been following this blog for a while, you know that I've expressed many times how RARE Ethan's leukemia is. When I say rare... I mean extremely rare. And when the hospital started giving us information about childhood cancer and information specific to JMML, after a while, I stopped reading it. In fact, I threw all of it away. To read all of the horrible statistics and the lack-luster prognosis, and then realize that THIS is the cancer your baby has... well, it was not pleasant. So I stopped reading things all together. Now that's not to say I am not completely informed about Ethan's specific treatments, etc.... because trust me, momma knows what's going on in my baby boy! But I just no longer felt the need to read research that was put together to inform me of such details that didn't have one ounce of hope about his disease... plus, the most recent information they could provide me was 3 to 4 years old, at best... some information was even 5 to 6 years old.
Well, the packet of information we received recently, though most if it was appreciated and helpful, they also included a JMML "explanation" that if I wasn't a believer in Lord, would probably have left me crippled - physically and emotionally.
Allow me to share with you the words that describe our little boy's disease and the outlook of his diagnosis and his life! as it has so often been presented to us in paper form.
Juvenile MyeloMonocytic Leukemia
"JMML represents about 1.5 percent of childhood leukemias. It occurs most often in infants and children under four years of age. JMML accounts for 1-2% of childhood leukemias each year; in the United States, an estimated 25-50 new cases are diagnosed each year, which also equates to about 3 cases per million children. There is no known environmental cause for JMML. Since about 10% of patients are diagnosed before 3 months of age, it is thought that JMML is a congenital condition in these infants. Such cancer originates in a marrow cell that normally functions to form blood cells. About 1 of 10 patients with juvenile myelomonocytic leukemia also have type 1 neurofibromatosis. Neurofibromatosis is a complex problem that includes brown spots on the skin and tumors of both large and small nerves that can arise almost anywhere." [side note: Ethan was tested back in April to see if his JMML also included neurofribromatosis and the tests came back negative.]
"Infants with JMML fail to thrive. Children are lethargic and have fever, persistent infections, and exaggerated bleeding in the skin, mouth, or nose. Enlargement of the liver may occur and enlargement of the spleen occurs in virtually every case. Enlarged lymph nodes are frequent."
Course, Prognosis and Treatment
"Unfortunately, JMML has been resistant to chemotherapy. Improvement in survival does occur after stem cell (bone marrow or cord blood) transplant, but a cure is uncommon. A minority of patients will have a prolonged course for one to three years but, thereafter, rapidly progress to life threatening complications including infection or hemorrhage. The median survival of patients with the juvenile form of the disease is usually less than two years. Younger children (less than two years) are more likely to have a prolonged course. Some children convert to a full-blown acute myelogenous leukemia that is resistant to current therapies. Occasionally, patients have a very long survival (over 10 years) despite persistence of abnormal blood counts and splenomegaly, independent of the type or intensity of therapy. Since current treatments are generally not curative, parents are encouraged to discuss the option of clinical trial programs with the child’s health care team. The only treatment that has resulted in cures for JMML is a bone marrow transplant, with about a 50% survival rate. The risk of relapsing after transplant is high, and has been recorded as high as 50%. Generally, JMML clinical researchers recommend that a patient have a bone marrow transplant scheduled as soon as possible after diagnosis. A younger age at bone marrow transplant appears to predict a better outcome."
Fun reading for a parent, huh? I'm sure you can understand why I didn't want any of this information lying around the house/hospital, and thus threw everything like this away. When I was presented with this information yet again the other day, I became angry with the words. I started tearing up the paper work and with each rip I told myself that these are just WORDS. I reminded myself that this disease is so rare that they don't have up to the date information. And I refused to hand Ethan's life over to these statistics. I don't think I've ever enjoyed making trash so much in my life. I hated those papers. I hated each and every word. I hated the foundation for sending it to me. I remember telling my dad how much I hated that they could send such awful information to a parent whose child has this disease and not be more mindful of how horrible it would come across. There is absolutely no comfort in reading that information. Now, I know some say, "knowledge is power". But the knowledge of the details of Ethan's leukemia does nothing to insight any type of hope or power in his ability to overcome. Read it again... you see what I mean? Nothing positive. Nothing comforting. Nothing hopeful. So, I'd like to change the phrase to instead read, "God is power". I don't care to know (or be reminded of) all the problems with Ethan's disease. I don't feel energized by that information. And I don't feel any more equipped for this battle for his life.
But... I do care to know the Lord's power. I do feel energized by HIS WORDS, and with Him, I do feel equipped for the battle. The words of cancer research tells us that Ethan will fail to thrive. But, the Words of promise that God has given to me, tell me that not only will Ethan survive but he will thrive. And to thrive means to grow or develop vigorously; to flourish. I LOVE WHAT THAT WORD MEANS!
Now allow me to share with you the words that God has to say about Ethan's life.
John 11:3-4... Therefore his sisters sent unto Him saying, Lord, behold, he whom Thou lovest is sick. When Jesus heard that, He said, This sickness is not unto death, but for the glory of God, that the Son of God might be glorified thereby.
1 Corinthians 2:5... That your faith should not stand in the wisdom of men, but in the power of God.
James 5:15a... And the prayer of faith shall save the sick, and the Lord shall raise him up.
Psalms 126:5... They that sow in tears shall reap in joy.
Joshua 1:9... Have I not commanded you? Be strong and of good courage; do not be afraid, nor be dismayed, for the LORD your God is with you wherever you go.
Matthew 21:21... Jesus answered and said unto them, Verily I say unto you, If ye have faith, and doubt not, ye shall not only do this which is done to the fig tree, but also if ye shall say unto this mountain, Be thou removed, and be thou cast into the sea; it shall be done.
Malachi 4:2... But unto you who fear [revere] My name, the Son of Righteousness shall arise with healing in His wings...
Isaiah 41:13... For I, the LORD your God, will hold your right hand, Saying to you, ‘Fear not, I will help you.’
Isaiah 40:29... He gives power to the weak, And to those who have no might He increases strength.
Mark 11:24... Therefore I say to you, whatever things you ask when you pray, believe that you receive them, and you will have them.
Psalm 91:9-16... Because you have made the LORD, who is my refuge, Even the Most High, your dwelling place, No evil shall befall you, Nor shall any plague come near your dwelling; For He shall give His angels charge over you, To keep you in all your ways. In their hands they shall bear you up, Lest you dash your foot against a stone. “Because he has set his love upon Me, therefore I will deliver him; I will set him on high, because he has known My name. He shall call upon Me, and I will answer him; I will be with him in trouble; I will deliver him and honor him. With long life I will satisfy him, And show him My salvation.
Romans 8:28... And we know that all things work together for good to those who love God, to those who are the called according to His purpose.
Psalm 73:28... But it is good for me to draw near to God; I have put my trust in the Lord God; that I may declare all Your works.
And of course, there are many more....
So which group of words would you rather have repeated to you?
No question. Give me words of hope. Not despair.
Friday, July 18, 2008
As of right now, the date Ethan will be admitted to Boston Children's hospital is August 4th. Adam, Ethan and I will be going to Boston on July 30th to review and discuss what Ethan's treatment plan will consist of (for example, radiation or no radiation, the final cord blood that was chosen, the details of his chemo and other medications, etc...), and Ethan will have some blood drawn a few tests run.
It was such a relief to have an official date in place (subject to change by a day or so, but we will know for sure during our visit on 7/30), but at the same time I felt a wave of apprehension flow through my body. There is an odd amount of comfort in "not knowing" things sometimes, and then there's of course comfort in "knowing" things. In our situation with Ethan, the "not knowing" when we'd be going to Boston has been a source of uncertainty and anxiety... but at the same time, it's been easy to pretend that life is normal and move on as if things weren't about to change. Like a sort of pleasant denial. But at the same time, you want to KNOW when things will change so you can start to prepare yourself. But, ya know, there is no real preparation.
You'd like to think that you can control your environment, that you can dot every 'i' and cross every 't', and that you can - on your own - be prepared for whatever life has for you. But it's just not true. You can lie to yourself and build a sort of temporary false hope in the fact that you've got everything under control... but really, understanding that you have NO control is the only thing you need to grasp in your "preparation efforts".
I don't know if any of this even makes sense. My mind is in a million and one places right now. I'm excited, nervous, thankful, scared, hopeful, determined, limp, eager... and well, you get the idea. But all I can come back to is knowing that no matter what I try to imagine these next few months looking like. No matter how much I think I know what to expect, the more I realize I have to stop.
I have to stop thinking, and over-thinking, and thinking again.
I have to stop.
Take a moment to breathe; soak it all in.
Then allow the tear to fall down my cheek.
The tear that represents my gratitude to the Lord for all that He has done for us and for Ethan...
And all that He will do.
And simply be content in believing that.
Psalm 91:9-12, 14-16 [emphasis added]
Because you have made the LORD... your dwelling place, No evil shall befall you, Nor shall any plague come near your dwelling; For He shall give His angels charge over you, To keep you in all your ways. In their hands they shall bear you up, Lest you dash your foot against a stone. [To which the LORD says,] “Because he has set his love upon Me, therefore I will deliver him; I will set him on high, because he has known My name. He shall call upon Me, and I will answer him; I will be with him in trouble; I will deliver him and honor him. With long life I will satisfy him , And show him My salvation.”
Wednesday, July 16, 2008
A young woman went to her mother and told her about her life and how things were so hard for her. She did not know how she was going to make it and wanted to give up, she was tired of fighting and struggling. It seemed as one problem was solved, a new one arose. Her mother took her to the kitchen. She filled three pots with water and placed each on a high fire. Soon the pots came to boil. In the first she placed carrots, in the second she placed eggs, and in the last she placed ground coffee beans. She let them sit and boil; without saying a word. In about twenty minutes she turned off the burners. She fished the carrots out and placed them in a bowl. She pulled the eggs out and placed them in a bowl. Then she ladled the coffee out and placed it in a bowl. Turning to her daughter, she asked, "Tell me what you see. "Carrots, eggs, and coffee," she replied. Her mother brought her closer and asked her to feel the carrots. She did and noted that they were soft. The mother then asked the daughter to take an egg and break it. After pulling off the shell, she observed the hard-boiled egg. Finally, the mother asked the daughter to sip the coffee. The daughter smiled, as she tasted its rich aroma. The daughter then asked, 'What does it mean?'
Her mother explained that each of these objects had faced the same adversity: boiling water.
Each reacted differently.
The carrot went in strong, hard, and unrelenting. However, after being subjected to the boiling water, it softened and became weak.
The egg had been fragile. Its thin outer shell had protected its liquid interior, but after sitting through the boiling water, its inside became hardened.
The ground coffee beans were unique, however. After they were in the boiling water, they had changed the water.
"Which are you?" she asked her daughter. When adversity knocks on your door, how do you respond? Are you a carrot, an egg or a coffee bean?
Which am I? Am I the carrot that seems strong, but with pain and adversity do I wilt and become soft and lose my strength? Am I the egg that starts with a malleable heart, but changes with the heat? Did I have a fluid spirit, but after a death, a breakup, a financial hardship or some other trial, have I become hardened and stiff? Does my shell look the same, but on the inside am I bitter and tough with a stiff spirit and hardened heart? Or am I like the coffee bean? The bean actually changes the hot water, the very circumstance that brings the pain. When the water gets hot, it releases the fragrance and flavor.
If you are like the bean, when things are at the worst, you get better and change the situation around you. When the hour is the darkest and trials are their greatest, do you elevate yourself to another level? How do you handle adversity? Are you a carrot, an egg or a coffee bean?
p.s. - Several have asked for an update on the prayer request I submitted for our friends Mike and Amy Lee with regard to the cyst growing on their little baby girl who is currently in the womb. They will be going back to the doctor on August 6th for another ultrasound with the hope that the cyst is no longer there and there is no further concern for Down's Syndrome. I know they have appreciated your prayers for them... continue to be in prayer for this specific appointment date for them.
The conclusion was that the surgery itself would be more harmful to Ethan than him not having a spleen during transplant, would benefit him. He advised that they talked at length about the pros and cons of each scenario and all felt comfortable it was best to leave the spleen alone. I am so thankful that he won't have to go through such surgery, and this means we will be moving right along with the transplant in Boston. I will find out more details about "when" we will be moving to Boston by next Monday, but I expect we are only about 2 weeks away.
We feel really good about being able to move forward with the transplant, basically, as soon as they are ready for us to come. And that our baby boy will get to keep his little organ... however, it isn't lost on me that his spleen is still a potential issue. It is still quite large and could cause some complications during the transplant (as the spleen will "soak up" all the new donor cells and potentially delay the spreading of those new cells throughout Ethan's body by quite some time). And due to the size of his spleen, it could cause Ethan some trouble breathing (as it could crowd his lungs if it continued to grow) - which is why there was such debate about removing it. But, they decided that the surgery for the spleen puts his body at too much risk and the benefits of not having his spleen during the transplant, though they are good benefits, are not enough to outweigh such risks.
You can see why we were so torn with which way to go.... but I'm satisfied that the Lord has been a significant part of this process from the beginning, and this decision today was His to make.
Who knows.... maybe Ethan being able to keep his spleen will be used as a major testimony to the doctors in Boston when his transplant works MUCH easier than any of them would expect... small miracles are always welcome, right? And I'd love to be a part of a "shock and awe" scenario, many times over, throughout this process!
Thank you for praying for wisdom in this question. We are getting close... so very close to this next chapter in Ethan's healing. You need to know - to fully understand - that you prayers for us have carried us through each and every day these past 3 months. I'm so grateful for you. So grateful that the Lord put you into our path. And in all honesty, I think we've only just begun to really need your help in going before our Lord in prayer for our little boy. This transplant phase will be a trying one and, humanly speaking, Ethan's little life hangs in the balance the entire time. However, I cling to the verse I have had on this site from day one... 1 Corinthians 2:5 -That your faith should not stand in the wisdom of men, but in the power of God.
Thank you for believing right along with us. Thank you for giving us your strength in prayers. And thank you for continuing to do so...
I pray the Lord blesses YOU with exactly what you need, when you need it.
Tuesday, July 15, 2008
Monday, July 14, 2008
- Labor of love
- At wit's end
- A shot in the dark
- A blessing in disguise
- Bend over backwards
- Better late than never
- Burning the candle at both ends
- Actions speak louder than words
- When it rains, it pours
- Don't put all your eggs in one basket
- Every cloud has a silver lining
- Great minds think alike
- Have your cake and eat it too
- Your guess is as good as mine
- Woke up on the wrong side of the bed
- Out of sight out of mind
- Absence makes the heart grow fonder
- Practice makes perfect
- Rome wasn't built in a day
- Skeletons in the closet
- Best of both worlds
- Don't judge a book by its cover
- Ball is in your/their court
- No pain, no gain
- Grin and bear it
There are hundreds of them. And for some reason, I was thinking about such phrases the other day. I was thinking about how often they are said in day to day conversations, how often they are written in cards or emails and - how often they bring a sense of comfort, reassurance or justification to us.
Along this same train of thought, I began to focus on a particular phrase.... 'No Pain, No Gain'.
I started mentally analyzing whether or not I had ever gone through pain in which I didn't feel the outcome was a positive gain in my life. Immediately I thought about exercising. I assume that exercising (for the average, every day person - such as myself) isn't necessarily fun or something you'd look forward to doing. However, you know that dealing with the "pain(s)" of running, biking or lifting weights invite wonderful "gains" to your being. You're in better shape and potentially more healthy. So I started to wonder if all the pain I've ever experienced in my life ALWAYS proved a positive gain. And unfortunately, the answer was no. Not every pain, produced a gain in which I enjoyed, was proud of, or thought was worth it.
In an effort to provide full disclosure I will let you in on a particular "skeleton in my closet". I have a small tattoo on my right foot. About the size of a nickel. Most people that I've met in my adult life, do not know about it as I have gone to great lengths to pretend it doesn't exist. I got this little marking about 10 years ago, right after high school. I'm sure at the time, I thought it was some sort of "right of passage"... but after about a month of having it permanently affixed to my body... I was over it. The place on my foot I decided to have them ink me is apparently a very sensitive spot. The tattoo consists of only 5 small lines (that are supposed to look like your hand doing the 'I love you' sign in sign language - however it looks more like, well, nothing at all!) and even though it was only 5 small lines, the pain was the most annoying pain I've ever gone through (not necessarily the most painful... I used to say that... until I had a baby, but it was a very real and annoyingly constant pain).
I went through a deal of "pain" however the "gain" left much to be desired. And now, 10 years later, I cover it up as if it's not even there so I don't have to be reminded of how needless the whole experience was.
A few years after getting the tattoo, I went to a plastic surgeon type of place to try and get it removed by a sort of laser. Now, I can say with all honesty that the pain caused by attempting to remove the tattoo is neck and neck with giving birth. Picture a giant - no, bigger than that - type of rubber band that has been pulled taut to full extended capacity.... and then let go, only to snap your skin with all of its power - repeat, repeat, repeat and repeat again. Unbelievable pain. I went back to the office for 3 rounds of these treatment sessions ($250 bucks a pop) and guess what.... that pain produced no gain either.... I still have the tattoo.... but instead of it being black, you could say it's a faded dark green. Talk about frustrating.
Why am I telling you this? Because thinking about this past experience in my life led me to thinking about this current experience in my life. Almost 6 months ago, I gave birth to a beautiful baby boy. "No pain, No gain" fits perfectly with the truth that the pain in giving birth produced a wonderful gain of a much desired son.
I've described two instances in which the no pain/no gain mentality left two completely different versions of "comfort"... or lack thereof... upon my life. One pain was a complete waste - twice! And one pain had the most rewarding end result. Sometimes it hurts to get to what we want, or better - what we need... and sometimes it hurts to figure out what we do not want.
And what I've realized with Ethan's illness and the drastic changes it has meant for mine and my husband's lives is that it yes, sometimes it does hurt to get to what we want, or what we need... And in that sense, with Ethan's cancer, there is much to be gained from the Lord if I am willing to pay attention.
I've learned that I will get eaten alive with doubt and despair if I do not fully seek the Lord every day and seek to learn what He is doing with Ethan's life to mold and change my life. If I miss the lesson, if I miss the growth, if I miss an opportunity... If I miss the point.... then what? Obviously we've been chosen. We've been chosen to be Ethan's parents. There's no mistake in that. And if I then choose to be bitter, closed-minded, fearful, in a constant bad mood, or angry then what I've missed it. I've missed the overall picture of Christ's plan, purpose and love.
I assure you our son having leukemia is serving a significant purpose. And it's not just a "your guess is as good as mine" type of reason, either. It's a real reason. A reason I might not get an opportunity to fully know or understand completely.... but I believe. And I know this journey is just as significant for me and Adam as it is for Ethan. So I don't want to waste it. I don't want to look back on all the pain endured during this season in our life, and see no personal, spiritual gain for myself.
I don't want to look back 10 years from now and see the mark this trial had on my life and feel I wasted any part of it.
So what do I do now with the pain I face regularly.... "grin and bear it". Because "every cloud has a silver lining" and along the way even when I am at my "wit's end"... those apparent set backs to my expectations are probably a "blessing in disguise".
p.s - Please pray for my meeting with Ethan's doctor this morning as we determine some sort of treatment plan for Ethan while he is at home for an extended period and pray for the board of specialists meeting tomorrow afternoon as Ethan's case is discussed regarding his spleen.
Friday, July 11, 2008
For forty days and nights, the Saviour was kept in the presence of Satan in the wilderness, and that, under circumstances of special trial, His human nature being weakened by want of food and rest (Matthew 4:1-11).
The furnace was heated seven times more than it [was to have been] heated, but the three Hebrew children were kept a season amid its flames as calm and composed in the presence of the tyrant's last appliances of torture, as they were in the presence of Jesus Himself before their time of deliverance came (Daniel chapter 3).
And the livelong night did Daniel sit among the lions, and when he was taken up out of the den, 'no manner of hurt was found upon him, because he believed in his God' (Daniel chapter 6).
They [all] dwelt in the presence of the enemy, because they dwelt in the presence of God."
Thursday, July 10, 2008
Anyway, I had a good conversation with his primary oncologist this morning. He said they've actually started debating once again whether or not it was beneficial to remove Ethan's spleen (side note: when I heard that, my heart jumped as I was reminded that it is God who is directing the steps of Ethan's treatment). He said he spoke with the surgeon, and the transplant doctor in Boston as well as a JMML specialist in Philly - and they are not sure that removing the spleen is actually more beneficial to his overall leukemia than leaving it in. They are comfortable with the fact that removing the spleen would aid in the transplant, but they also acknowledge that the spleen surgery would leave Ethan vulnerable to a life-threatening infection in the blood (sepsis).
The surgeon advised the oncologists that though it is rare, it is possible of Ethan getting such an infection from the surgery and to be sure that the surgery was necessary to Ethan's overall treatment (leading to his being cured of cancer). The oncologist shared with me that there is not enough evidence to prove that Ethan's spleen really needs to come out in order for him to avoid relapse of cancer down the road. There are JMML patients who relapse whether they have a spleen or not, and likewise there are patients that do not relapse whether they have a spleen or not, so the overall benefit, if any, is not overwhelmingly evident. However, a large spleen can interfere with the transplant process - that much they do know. The spleen being large can affect the lungs ability to function due to crowding, and among a few other things, it can eat up the new cells making it longer for the donor cells to reach the necessary areas of Ethan's body. So common sense, in that regard, tells you to remove the spleen to avoid those types of complications. However, the question remains, is it a greater risk to leave the spleen in and hope that those complications aren't a serious factor during the transplant.... or do you remove the spleen and hope that the blood infection doesn't occur?
Well, apparently THAT question didn't sit well with Ethan's doctor and he wanted to do more "digging". Can I just say, that I am so thankful that he has taken such detailed care of our son! I am so impressed that Ethan's doctors are treating him with the same concern and delicacy as we are, being his parents. I thanked the Lord for that very thing as I left the hospital today.
But I digress... the specialist in Philly said that they do partial spleen removals when they have JMML patients. That reduces the risk of sepsis (blood infection), and gives a better result during transplant (lessens the above noted risks) than having the whole spleen. I liked the sound of all of that. AND, I asked if the spleen was an organ that would grow back down the road, and he said yes. So, Ethan could one day have a fully functioning spleen - which took care of the anxiety I had about all of that!
Ethan's oncologist and the surgeon have requested a meeting with the Cancer/Tumor and Surgeon Board of Specialists on Tuesday to discuss Ethan's scenario. With all the wisdom and knowledge that will be in that room, Ethan's doctor is certain they will come up with a decision that's best for Ethan - taking everything about his case into consideration. The decision before them/us is either to leave the spleen alone, or to remove only part of it. Please be in prayer for this meeting next Tuesday. I want a confidence to arise, one way or another. I am so encouraged that this is being looked into further and that the Lord reminded me today (again), that He is fully engaged in each step of this process.
I have rough days.
And there are set backs to my faith at times.
But even when I can't get out of my own way, and I choose to pout rather than see that God might still be working....
He takes the time to remind me that He is still working.... working diligently.... on Ethan's behalf, on mine, and on Adam's. He is FOR our precious little family of 3. Never against us.
Ethan and I will go back on Monday for another outpatient appointment (his counts were good enough today that no transfusion was needed!) At that time, his doctor wants to talk to me about starting a type of treatment plan over the next couple of weeks before we move to transplant (regardless of the decision that's made about the spleen during their meeting the following day). I'm not sure what that conversation will involve, but please pray for wisdom for both the doctor and myself so that when we talk on Monday - the best and correct decision is made to ensure Ethan stays healthy.
Joshua 1:9 - Have I not commanded you? Be strong and of good courage; do not be afraid, nor be dismayed, for the LORD your God is with you wherever you go.
p.s. - After I posted the above verse, I decided to do a quick search on the meaning of "dismayed". I am certainly familiar with the word, but curiosity got the best of me anyway:
dis·may, dis·mayed, dis·may·ing, dis·mays - courtesy of dictionary.com:
1. To destroy the courage or resolution of by exciting dread or apprehension.
2. To cause to lose enthusiasm; disillusion:
3. To upset or alarm.
Dismayed is how I had been feeling the past couple of days. But today, He is reminding me to be strong, to not lost enthusiasm... He is with me - with us - wherever we go.
Wednesday, July 9, 2008
Just thought I'd share some pictures of Ethan's first experiences with baby foods. So far, he LOVES carrots, likes butternut squash okay, and isn't that passionate about pears. We're going to experience more flavors soon before he has to go into surgery. Mainly because it's fun for mommy, but truth be told, he loves to eat from a spoon. He took to it right away! He's getting to be so grown up....
Tuesday, July 8, 2008
I found myself dying a little on the inside as I saw Adam have such certainty right away that this was what we needed to do for Ethan, and yet my feelings were so completely confused and raw. I was almost angry that the surgeon didn't advise us against it. Deep down, I think I was assuming that was going to be the case.... that we'd hear that the surgery was very dangerous and that we shouldn't do it unless it was absolutely crucial that we did. But he didn't. He described the surgery itself to be quite easy - as far as a surgeon is concerned - much different from a mommy's perspective I assure you!
His descriptions included stuff like, Ethan won't be able to eat for about 4 days or so due to his intestines and stomach's initial inability to digest... therefore he will be "fed" through his central line with the necessary nutrients going through his veins (Though I knew we'd be faced with that scenario once we got to Boston for the transplant, I wasn't ready to deal with that just yet. I started to cry as I imagined not being able to comfort him with a bottle when he "felt" hungry and not being able to keep feeding him his "baby foods" like we've just started and that he likes so much). He will have a tube through his nose to assist with breathing and to aid in keeping him from vomiting. He will also have a drainage tube coming out of his side to ensure that the pancreas (another organ) wasn't damaged during the surgery and leaking into other areas of his body. They will have to cut into his little belly, starting around the breastbone and ending on the left side of his rib cage.
Aside from the surgery, he further advised (or reminded us) that life without a spleen will be slightly challenging. Ethan will need to be on Penicillin every day for about 7 to 10 years with a re-evaluation after that time. With the hope that the bacteria that causes pneumonia, meningitis, and the like, did not build a resistance to the antibiotic. He will also need antibiotics to prevent bacterial infections of the bloodstream (sepsis). Not to mention the "extra care" he will need to receive with the common cold and other sickness that most kids pick up from school. He further informed us that Ethan will not be able to get the rest of his vaccinations because his body would not be able to withstand them without the aid of a spleen, which of course could leave him vulnerable to those diseases.
Like I said, I had told myself that the surgery was all I was concerned about. But that's not true. My heart is broken right now, knowing what we have to do and hating that we have to do it.
After the consultation, Adam and I each had very different emotions and perspectives. He was relieved that the surgeon felt confident he could do the surgery with mild to no complications and felt that was his answer to prayer that Ethan's spleen should come out. I, on the other hand, was way more emotional about it. I fell a part. I felt upset, sad, disappointed. Everything hit me once again. The reality of our situation. When we're at home with Ethan, it's easy for me to push aside how "dark" our life is right now. But when we have to face a decision like this, the reality of just how tough of all of this really is - is like a blow to my chest... leaving me searching and desperately grasping for air. Leaving me weak. Tired. An in deep sadness. A sadness unlike any other.
After the consultation with the surgeon I called the doctor in Boston who will be doing Ethan's transplant. I left a message for her to call me back and much to my surprise, late last night, she did. I shared with her how torn I was about whether or not to remove Ethan's spleen and asked her one last time for her professional opinion. The truth is, with Ethan's type of cancer, it is so extremely rare that there is not enough evidence one way or another about a lot of the treatment he gets. However, when I cornered her for a more specific answer, she told me that if she had to say yes or no to removing it, she'd have to say yes. In her studying the situation against other JMML cases, when you do a bone marrow transplant, it's not necessary for the spleen to be removed. However, there is no such proof with a cord blood transplant. And what they do know, is that with a cord blood transplant it takes longer (over a month) for the donor's blood to begin growing in the patient's body.... and the spleen has a tendency to soak up all the new cells, thus making it much longer (and more dangerous for Ethan's life) if the spleen isn't removed in the first place. They at times make the decision in the middle of the transplant to remove the spleen if it's interfering with the transplant, but at that point the surgery is much more dangerous.
Which brings me back to what I said initially. I know what we need to do. He needs to have the spleen removed. That much I am at "peace" with. But to say that I didn't cry myself to sleep last night, or that I haven't cried several hundred tears this morning... well, it's just very hard. It's just all so very hard. I do trust the Lord. I do. But even Jesus, knowing His own power and the outcome that power would bring, wept when He learned of Lazarus....
Be patient with me, Lord. I am trying.... but this is not easy for me right now.
Monday, July 7, 2008
I am also taking Ethan to an outpatient visit this morning at 10:30, so also pray that his counts are good and that he doesn't need any transfusions (he had a blood and platelet transfusion last Thursday).
I will update you all tomorrow with our decision about Ethan's spleen, thank you for praying!
Thursday, July 3, 2008
Ethan has to go back to the doctor tomorrow for some routine blood work. Since Adam is off for the 4th of July, then we will make the trip to the hospital a bit of a family field trip. I imagine we'll stop at McDonald's to appease my McMuffin craving and since the outpatient area will be closed, we will go up to the inpatient floor and chill out in a room for a few hours as we wait to see whether or not Ethan needs a blood transfusion. Hopefully, he won't, because then that'd mean we'd be there for a few more hours... but I've decided that even if he does, and we're there for the potential 6 or 7 hours... at least we're all together... our sweet family of three (well, us being there together with a TV doesn't hurt, either!). Just kidding, but in all seriousness I find myself LOVING the times the 3 of us can be together since I know that soon, Ethan and I will be in Boston and only seeing Adam when he comes up on weekends.
By the way, thank you for praying for us to have wisdom about Ethan's spleen. His oncologists here in Hartford and in Boston feel that removing the spleen has more pros than cons. However, they aren't surgeons, so they can't really answer our concerns about how intense the surgery would be. So we have a consultation appointment with the surgeon on Monday to have a discussion about how dangerous the surgery would be on Ethan's little body. If he seems to think it'd be pretty routine and that he'd recover quite well, then we will probably move forward in that direction. However, if he suggests that the surgery would be very intricate and more complicated because Ethan is a baby, then I think we're going to make the decision not to do it.
Removing his spleen isn't an absolutely necessary piece to this whole puzzle, however the docs think that it could be a help in ridding Ethan's body of cancer (since his spleen has a lot of cancer living in it). Anyway, the final decision is up to me and Adam. And after our consultation with the surgeon on Monday, I believe we will have our answer. Please pray that both Adam and I have a the clarity to ask about all the concerns we have, and that the surgeon can speak with wisdom and confidence either way. Pray also that we have a peace about the best option for Ethan.
Habakkuk 3:17-18 Though the fig tree may not blossom, Nor fruit be on the vines; Though the labor of the olive may fail, And the fields yield no food; Though the flock may be cut off from the fold, And there be no herd in the stalls—Yet I will rejoice in the LORD, I will joy in the God of my salvation.
Wednesday, July 2, 2008
But I still can't believe it's July! I'm so thankful! Back in April, we had no idea what the next few months were going to look like, and even whether or not we'd be able to get through them. But looking back now.... wow. That's all I can say. Wow. Not only did we get through the past months and all the daily details, but we went through it all fairly easily, and Ethan has continued to thrive despite his horrible cancer. God's grace just seemed to pick us up and float us through each day. There were rough spots, but He never let us fall from His hands. And I need to remember that as we face the next chapter of Ethan's story....
Continue to pray about what will be done about Ethan's spleen. I need the doctors in Hartford and in Boston to agree about what needs to be done - whether to take it out or leave it in. I've mentioned before that it doesn't bother me that he could live without a spleen. I know people that are wonderfully "normal" that do not have a spleen. However, my concern is whether or not his little body can handle a major surgery and then a major cord blood transplant. If the decision is made to remove the spleen, it's because his spleen has quite a bit of cancer living in it. The transplant could help remove the cancer, but it is really meant to keep new cancer cells from growing. If they remove the spleen, he may not need as intense chemo treatments prior to the transplant (which is intended to kill off any cancer in his body at that time). So there is good arguments to remove it.... however, it is surgery.... and he is a baby.... and they'd be removing an organ. And Ethan's body has already been through so much. So needless to say I need the Lord's wisdom to be with the doctors and whatever they decide upon, I will trust is from the Lord. Please also pray that all of this can happen quickly and there is no delay in moving forward with Ethan's transplant. He needs a recovery period from his last round of chemo before we can transplant and a recovery period before and after surgery of the spleen. So there's a lot a "waiting" - in the mean time, we don't want Ethan to lose any of the progress he's made thus far, so please pray he will be fully protected by God's grace and mercy as we "wait".