Where do I start? Maybe I should start with some great news, or happy news before going into my "dark moments".
Last week we had a break from doctors thank God! It was nice to not have to worry about heading in for more testing, more blood, etc... On Thursday last week I contacted the Transplant doctor and her team because I had not heard from them about seeing them yesterday along with our Immunologist. Well... sure enough i didn't hear back Thursday, so I called back Friday, and nothing... Finally Saturday morning I heard from our nurse who told me the doctor wouldn't be able to see us because this week was her inpatient clinic days...ugghhhh... so i questioned why? We hadn't seen her in two weeks? are we still on schedule for admitting on Monday, May 1st? Well the answer was... ok the doctor will see you... and No! you are not being admitted until MAY 12TH!!!! WTH?????? ok.... calming down now... Saturday night was my long awaited girls night out with some friends. I decided that the bad news would not affect my night... oh by the way, Emil got sick again, and so he couldn't watch Sebastian, so once again my mom came to the rescue to watch Sebastian while I went out with friends.
we went to a place called the Riddle room and were able to solve and get out with 2 min to spare... so much Fun! Then we headed to Maggianos for dinner and then to the Cholocate Bar for dessert!! BEST NIGHT EVER!! What are you celebrating they asked.... FREEDOM!! BAHHAHAHAH! (but it's true... I prohibited Emil from calling me for NON Emergencies hahah). I had so much fun, laughed so hard, and can't be more thankful for friends in my life! So Thank you again Ladies!! a repeat is in the horizon lol :) By the way the AMAZING Emma Louise Jeter ran 100 miles for SEBASTIAN!! She is a tad crazy in my book but AMAZING!! THANK YOU EMMA!! WE LOVE YOU! THANKS FOR THE DONATIONS TO ENCOURAGE HER TO RUN AS MUCH AS SHE DID!
Sunday, Emil and the kids headed to church, Emil was so touched by the sermon. He said he wanted to speak to the pastor but that he was so busy with other people he didn't have a chance to connect. He said that the sermon was directed to him, was about him and how he is. We prayed and cried when he got home, it was great to see that God had touched Him the way He did!
Well.... here we go... the dreaded appointment day. I have found that I HATE THE HOSPITAL!! I get so anxious leading up to the appointment time and completely shut down. I don't say much... and I am not sure why. I think it's my brain and my spirit fighting each other. One telling me to TRUST GOD and the other telling me to get ready for the WORST!! ugggggghhhhhhh I HATE IT SO MUCH!!! Alright.... so we had a late appointment yesterday so that we could see both doctors without having to wait hours in between. Dr. Nicholas (Immunologist) went as scheduled. Sebastian is doing well, everything looks good- keep him that way... weight... 15 lbs 6 oz.... height... 23 inches long! Baby boy is growing!! We told her about he transplant change date and she had no idea it had changed so she told me to call her after our appointment... which now that I think about it... I didn't lol... I will tomorrow hahah. Ok.... so here we go... Dr. Martinez (Transplant Doctor)... the appointment of ... I don't even know what to call it.... here goes.
Remember that we HAD a match?!?!? Ok... we DON'T! The original match they had was incompatible after an array of testing, and she did not want to risk Sebastian rejecting the transplant. Now what? Well... we all got prepped for blood work yet again (Emil, baby and I). She explained that she had found a donor match and the donor was unavailable :( (by the way whoever you are...arrrrrrrrrrgggghhhhhhhhhhh!!! Just kidding, but really ugggggghhhhhhh). She said she found another potential match in the cord blood registry but that it is an international one, so she has to wait for it to be tested. In the meantime she is still searching the donor registry and now the 3rd choice is a parent donor. Ha! There's a catch though... first is the donor process (5 days of daily shots... 4 to be exact and then a whole day of being poked to see if you have produced enough cells for extraction.. all this time, you are in pain, so on pain meds, and very uncomfortable and maybe a whole bunch of other side effects!) She did say she would prefer that Emil was the donor because I will be in the hospital with baby and I am the caregiver at the moment. We are both being tested again to see if we are positive/negative for CMV- that will determine who will be the donor. Now... what does this mean... neither of us is a 100% match- we are each 50% compatible. So what they will do is a haploidentical transplant with a protocol called Bellicum. (Haploidentical Stem Cell Transplant. An allogeneic haemopoietic stem cell (HPC) transplant involves matching a patient's tissue type, specifically their human leukocyte antigen (HLA) tissue type, with that of a related or unrelated donor.) Now, that basically means they manipulate the donor cells to make them more of a match for transplant. She did say that this has been done for cancer patients but not for a SCID baby in the USA. She said it has been successful in Europe and that Science has evolved so much that they can do it here. So yup... those are our choices and we won't know which it will be till Monday of next week at the latest. So another week of waiting... AGAIN!! wE have been given a tentative Admitting date of May 12th. We also got a call today to get the PICC Line (IV) scheduled to be inserted on May 12th at noon. He won't be able to have any milk after 430 a.m..... I am not sure how that will work- he can have clear liquids up to 830 a.m.....
So the magic question... how am I doing?? In all honesty.... Not well enough. Why not well enough. Yesterday when we got home I shut down. I took my baby to the room, we both took a bath/shower and I just held him and cried. I basically cried myself to sleep. I was exhausted. After I awoke, I looked to God... asked Him why? What does He want from me? From Emil? From us? What is your ultimate plan? Can you give me a glimpse into the end of the journey? He sent me back to a post I had read and taken a screen shot of that said this... "It's easy to be negative, doubtful, and let the circumstances convince you it's never going to happen. That doesn't take away faith. But when it seems impossible, that's when you have to dig your heels in and say, " The odds may be against me, but God, I know You are for me. I believe it's my high time. I believe things are about to change in my favor." JOEL OSTEEN.
It's crazy right... God speaks to us even when we are so loudly screaming that a small whisper is enough to quite all the noise in your life. I think God knows that I am not quiet so He doesn't scream back at me.. "BLANCA, QUIT BEING SO STUBBORN, I GOT THIS!! I GOT YOU!!" instead He Whispers... and says... "I LOVE YOU! I AM HOLDING YOU THROUGH THIS! I GOT YOU! I LOVE SEBASTIAN! I LOVE EMIL! i LOVE YOUR FAMILY! AND THROUGH THIS WE WILL GET THROUGH TOGETHER! So here I am again... Looking Up, while my feet are touching this hard pavement of darkness and pain... I am waiting for the Spirit to carry me through this and to one day soon be able to look down at myself being carried by God.
This road is not EASY! not for one bit! I am in pain, I am hurting... but I am holding on to His promises... That He will give me joy when I call out in Pain, that He won't give me more than I can endure, that He will strengthen me and help me. That The Lord will fight for me and hold me in peace; that whatever I ask for in His name He shall give me; that He will be my provider, my guide, my strength, my Everything!
So I leave you with this... In my weakness He is strong.. so today I am weak, but I hold on to my strength in Him. I may not be cheery and smiley today, but I promise to never let go of Faith. I trust God, I trust that He in control. The road is rocky, but I accept this road, for at the end of the rocky road, there is paradise.
Please continue to pray with us and for us. Please continue to share our story and our pages. Thank you for everything! I love you all! God is Good! God is Love!
PS... thanks for reading into a small chapter of my life lol...
#scidwontstopthiskid #scidsucks #SIRStrong #sebastianwillwin#prayforSebastian #scidawareness #bmtbaby #bubblebaby #bmtpatient#texaschildrens #texaschildrenshospital #Godisourhealer#roadtotransplant #teamRomero #joelosteenministries #joelosteen #ksbj#keepfaith #keepstrong #bestrongandcourageous
Although this road is long and EXTREMELY tough, you are exactly right, you have others and God to help see you through this journey. Lean on them. Lean on us. I'm hoping Share gives you a sense of support and relief and therapy to allow yourself to speak your mind and let it out!
We are all hear for you and thinking of you leading up to May 12.
Lots of love and hugs,
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