Our morning started off fine, though slightly busy. We had to make a stop at the Children's Hospital here in Connecticut this morning before heading to Boston so that Ethan could get another transfusion of platelets. From there, we headed towards our consultation in Boston. The drive was nice. Adam and I shared some concerns, but overall we just had fun and enjoyed each other's company. However, when Adam and I were driving around the parking garage in Boston, looking for a spot, a sick feeling settled into the pit of my stomach as I realized once again that my little boy has cancer. Of course, I know and have known of his disease for over a month and a half now... sometimes it just hits you right between the eyes all over again. And it did this afternoon. We made our way to the cancer floor and got checked in. I was able to feed Ethan while we waited to be called back for the consultation. As we waited we were able to read over a packet of information that explains a lot of the logistics of the transplant, room amenities for me while I stay with Ethan, etc. The hospital is very nice. It was our first visit there, and we were immediately impressed with the entire layout and the surrounding areas. I was starting to feel a peace come over me as I have been dreading the whole "Boston" thing. I've been mildly depressed about having to "live" there for 2 or so months, away from my home, my husband and all my comfort zones, but... after seeing the actual place, and learning about what areas outside of the hospital I will have access to, I started to really feel comfortable with everything... and that was before we even met with the doctor.
When we finally met with the doctor, Adam and I felt very relieved. Her demeanor and personality immediately put us at ease. And even though she had some tough information to give us, she also was very encouraging and hopeful about Ethan's situation. She was patient with us in answering all of our questions and shared with us all of the next steps that will take place. She was very thorough and earned our trust right away. Without even finishing the conversation with her, Adam and I both felt at peace about moving forward with the direction of the transplant. Yes, there are areas of risk, but we have to recognize that our job as parents is to handle all of the areas that we can, and leave to God the areas in which we have no control. I could go on and on about all of the details, but I'll simply say that we felt such peace today about what we needed to do for Ethan and we recognize that it was through the help of your prayers for such peace and such clarity. Thank you. Thank you. Thank you. I am continually encouraged and blessed by your emails, comments, cards and prayers. This would surely be a long, lonely road for us without your love and support. Family. Friends. Strangers. Every one of you. Even if you've never sent us a card or an email, I'm still talking to you. Because I know many out there read this blog and pray for us regularly, and that knowledge alone gets me through the day.
So... what now? Well, there is still no match for Ethan. Not to say that they haven't truly found one, it's just that they are still in the middle of the search. There are various details involved so it takes a long time. The doctor estimated the transplant would happen in July with about a 2 month stay in Boston afterwards before being discharged back to Connecticut. Due to the dangers and risks involved I would like to ask that you join us in starting to pray even now against such dangers and risks. I am so encouraged by your prayers as, so far, every time I have asked for prayer from you, the Lord has been faithful. I'd like to continue that trend and begin praying God's protection over Ethan in each of the following ways:
1. Pray that they do not have to use radiation as a part of Ethan's treatment. They are hopeful they won't have to, but it is possible that they might. Radiation can stunt his growth since he is a baby and can cause problems with his spinal cord.
2. Infertility is a possible side effect from all of the treatments Ethan will endure. (When the doctor said that, my heart sank and I immediately imagined Ethan having to tell his future wife that he'd not be able to have kids). Of all the things she shared with us, that is the one thing that brought tears to my eyes. Pray that infertility will not be an issue with him and that God would allow Ethan and his future wife all the children they desire.
3. Pray also against a specific side effect called GVHD (Graft-versus-host disease). It has varying degrees of problems, but the most basic way to describe it is that the donor's bone marrow cells attack Ethan's body. It can be in a mild form, or in a very chronic form. Please pray that NO FORM of GVHD happens in Ethan's body.
4. As they are conducting the donor search, though we will be happy with whatever match comes available for Ethan, the BEST scenario of a match for him would be a younger (age 20's or 30's) male. Please be in prayer that Ethan's donor fit that description.
5. Please pray that the match is found quickly and that transplant can happen before July... basically because the sooner the better for Ethan's sake. And continue to pray that the cost of the search does not exceed the amount allotted for it.
6. Pray that Ethan has no complications with the transplant (there is a 10% chance that a patient could die during transplant) and that we are able to come back to Connecticut within 6 to 8 weeks following the transplant and not have to stay in Boston longer due to complications or infections.
7. Pray that Ethan continues to respond to the chemo and the "at home" treatments he currently undergoes, as that keeps him stable as we wait for the transplant. Pray against infection, fever, that his body doesn't build a resistance to the medications and for the bad cells stay low and the good cells stay high... and that we continue to be able to come home in between chemo treatments as that is a special "family blessing" for us.
8. Pray against the severe mouth sores (mucositis) that result from the transplant.
9. Pray for Adam and I to have the health and strength we need to endure these next 9 to 12 months.
I know this is a lot to remember and a lot to ask for your help in praying... however, these are the biggest areas of concern for our little baby boy and I only ask for your help in the most humble of ways as I know I need help in lifting up each of these specific areas. I believe prayer is needed even now for the protection Ethan will need in the near future. I'm sure there will be other requests that pop up, but these areas weigh the heaviest on my heart at this point. I have such a wonderful peace in knowing that all of us can bow before the throne of God and ask for His mercy, provision and grace over his precious child, Ethan, who IS fearfully and wonderfully made. As horrible and unfathomable as this whole situation is for us as parents, Ethan was created by God. Ethan has a purpose and I do not believe that his purpose is short-lived. God, who has the ability and the love to save my son and give him a life of special meaning here on earth, WILL hear our prayers. He already has. And has answered every one up to this point.
Thank you, Lord. Thank you for your clear peace... and even your joy today. Continue working your miracle in our baby boy. Continue to work your wonder in all of us.
p.s. - I have to take Ethan for another outpatient appointment tomorrow (Thursday) afternoon to check his red blood cell count. If they are too low, he will need another transfusion on Friday morning. Please pray for a positive jump in his number of red cells tomorrow!
Thank you again for all the prayers today. We felt every single one of them.
We love you all.