SIR strong fighting SCID
On February 12th, 2017 our sweet boy was born… Sebastian Isaac Romero. Born at 2:59 p.m., weighing 8 lbs 9 oz, 20 inches long with a full head of hair, super cuddly and cute and a day earlier than we had planned. During my pregnancy everything was normal, or at least most of it. I had to be put on bedrest because this kiddo wanted to come early. Let’s just say Sebastian has been on his own schedule the entire time. We went home as normal after 2 days - with a healthy looking baby.
Then the news came… on February 21st, 2017 we got the call, a call no parent wants to get. Our pediatrician called and left me a message because I was feeding Sebastian and he then tried my husband. Emil later called me and asked me if I had spoken to the doctor and I said no, why? So he told me to sit down because he had some bad news. They had found abnormalities in his immune system when they did the Newborn screening. I broke down! I cried relentlessly for a few hours.
We were scheduled to go see an Immunologist at Texas Children’s on Thursday, February 23rd, 2017. There the doctor went over the three possible results from the tests she was going to run on him.
1. False Positive- we would never see her again
2. Very minimal level of SCID- which requires only medicines.
3. SCID- No immune system at all.
That Thursday was the longest day of our lives. The wait was horrible and we prayed without ceasing. In the midst of tears, we begged God to give us a negative result which would mean that our baby was healthy. That was not to be the case At about 5.30 that evening, the doctor called us back with the devastating news that he is a SCID baby and we have to start moving quickly to get a Bone Marrow Transplant. They said he only had 50 good TCells out of a possible 1500 he should have at his age.
So our journey begins…..
What is SCID?
Severe combined immunodeficiency, also known as the bubble baby disease, is the result of an immune system so highly compromised that it is considered almost absent. This means that until he is cured, Sebastian will be in a sterile, isolated environment with me. (Mom). It also means that Abraham and Kayla, his brother and sister won’t be able to see him either.
The only treatment for SCID is a Bone Marrow Transplant and we are hoping that one of his siblings (Abraham or Kayla) will be a 100% match so that they can be the donors and his best chance. If there is no match then we have to go to the Bone Marrow Bank and that would take a little bit of time for them to find a match.
On Tuesday, March 7th, 2017- we are scheduled for another appointment to meet with the Bone Marrow Transplant Surgeon and to get the kids tested to check if they are a match.
The transplant process will be a long and high risk one. The doctors say that with the transplant Sebastian has a better chance of living a healthy and normal life. They also said that the success rate of the bone marrow transplant before the third month of life of a baby with SCID is 90% successful. So it’s a race right now. The doctors say if there is a match, then within 5 weeks we should be getting admitted to the hospital to start CHEMO to kill the cells he has and make room for the transplant. During the time that Sebastian is in the hospital, I will have to be there with him permanently in isolation. Visitors are not allowed because of the delicate condition of babies with SCID. I am currently on maternity leave but once that ends on March 27th, I will be losing any sort of income. I am currently the main breadwinner in our house so this will put a huge dent in our finances. We are doing everything possible to prepare for this, I am planning on having a few bake sales, and will depend on my Tupperware side business to help us a little, but it surely won’t be enough. The estimated time they expect this entire ordeal to last is about 3 months (counting this week). Praying there are no complications of course. After those 3 months Sebastian will be going in for some weekly and monthly checks to see how he’s doing, and that can last for more than a year. Emil will have to miss some work to be there with me and travelling back and forth between the hospital and home because our other two kids will need one of us to be there for them as well.
It will be a long, difficult road but we are trusting that God can heal our Sebastian at any time.
We are asking for any sort of help you can give us. We have a lot of friends and family praying with us and offering to spend time with our kids as to provide them with some sort of entertainment while mommy and daddy help Sebastian. I spoke with my HR department today and basically I am allowed to change from FMLA to Medical leave when FMLA ends, but of course all unpaid. We need your help. if God puts it in your heart to help, thank you! If you can only pray with us… then that in itself is a great blessing. The more prayer warriors we can have, the better! We are in it to win it! #SebastianStrong We will beat SCID and we will see Sebastian grow up to be a great man of God with a powerful Testimony!
The total cost of the treatment is likely to be more than a frightening $1,000,000 and while we are insured, it will not cover a lot of it. What will the funds be used for? Every penny will be used to help us cover medical bills and cost of living in the hospital and paying off monthly expenses that can’t or won’t be covered with Emil’s pay check alone. Unfortunately these things are not things you plan to happen… we were preparing to have Sebastian home and able to enjoy him. Emil and I have always been a team and will continue to be one but we need a village to help us at this time.
I am not one to ever ask for anything for myself, I am more of a giver and like to do stuff for others, and I can easily ask for donations for others, but I find myself in this situation asking you for help for us now. So anything helps.
God bless you many times over! We love each of you! And we will overcome this hurdle. Stay tuned for updates… #SIRstrong
Unfortunately Sebastian has tested positive for the HPIV 1- thankfully the doctors want to treat him as more of a “precautionary” method. Sebastian will be admitted today (emil and I are getting ready as we speak) for at least 5 days. The doctors fear that if he is not admitted he can get pneumonia and that can be very dangerous for Sebastian at this point past transplant.
I am so anxious and scared. You never want to hear things like this- especially after you’ve seen what these viruses have done to other SCID babies. Although I trust God that he has Sebastian in His Hands and knows the plans He has for him- the unknown for me is so nerve wrecking. Please pray for our family- especially for Sebastian. We are planning what to do rightnow with the other two kids - uggghhh the stress!!!
God help me!!!!
Alright that’s it for now... oh yes please say a prayer that my job comes back with something positive so I can go back- the last I spoke to them they told me that my job was now non existent and I had to wait to interview for any new positions that might come around. I know God has us and He has demonstrated that but with Emil’s unemployment now depleted the stress on both of us is unreal.
The journey is so bumpy and hard... we are waiting on results from the last immune system function blood work that was taken! Please pray we have excellent results! Last week was tough for me when we were told that Sebastian is doing good .... but... his levels are not where they expected them to be at this point in time after transplant. The doctor assured us this is not unusual with his type of transplant (haploidentical- since he didn't have a
Now momma (me) have been sick with a cold, sore throat, fevers and achy everything so I've isolated myself to one of the bedrooms to prevent anyone else from getting sick. I am sick and tired of being sick and getting this news early this morning put my anxiety levels above 1000%!! I hate SCID!! We have an appointment on Wednesday at 730 to get the infusion and some blood work done. The last count of ANC levels were great- over 1000% which is great but this rollercoaster is so stressful and intense.
My prayers are that these cells will supernaturally multiply and that SCID will be no more! I see other SCID fighters enjoying life and some others losing the battle and for a mother this journey is hard!! So hard!!
I have been getting calls and emails asking me when my return to work will be but with all these things going on it is next to impossible- the life of my child is first and I won't be able to take any other medical leaves for another year after I go back so we have to think this through carefully. Emil is still hunting as we await his appointment for citizenship. God this is so hard!! So many things on the line... medical bills, expenses, life! I wish this on no one! My heart is troubled but I ask God to give me peace! I am weak but I know He is strong! I have nothing and I know he is the God of everything! I am lost! Please pray for me and my family.
I want to blame all these feelings on being sick and feeling helpless and hopeless
Now some of the rash could also be triggered by the milk he is taking because we did see an increase when we changed to the one WIC gives us for Sebastian (similac advance)- so we have officially switched back to Enfamil. We have to make sure to keep Sebastian's skin "hydrated" to ease the discomfort- so I've been doing the steroid cream 3 times a day, two baths, aquaphor body cream and keeping him covered up to try to retain some moisture. I hate that I can't do more for him- I hate that I can't take it away.
Sebastian is so strong- this child truly is my hero- here I am complaining about pain in my lower back and he is itchy all over and being a trooper- smiling and playing- he does have his sad moments where he is grouchy and fussy but overall his mood surpasses what I would be in his situation. SCID sucks for real!
Now... today I have cried several times... not so much out of sadness but of joy. When i tell you God is good - HE IS SO GOOD! Here's another proof story for you.... so I mentioned that we had to change milks for Sebastian. As most of you know anything baby related- or anything in this life for that matter is expensive. So WIC (government help) gives us 7 cans of milk for Sebastian a month. They only give us Similac- which Sebastian can't drink- we've tried taking prescriptions for enfamil but they don't provide that anymore- so now that we've changed milk we are now stuck with that cost out of pocket. Never in a million years would I have thought that I would be struggling with buying milk for my child- but GOD... oh GOD- so good... my sister put a call out to see if anyone knew how we could get help and surely enough... angels appeared.. I call them Gods hands and feet... we have had complete strangers reach out wanting to help.... this morning and last night we have had 5 people total being milk for Sebastian - and now I can say that for at least the rest of this month I don't have to worry about that. I am beyond thankful and overwhelmed once again by the goodness of people! Thank you! Thank you!
Thank you for each little gesture... the diapers, the milk, the wipes... the clothes that we got from A friend in Louisiana! I am so thankful... and I hope to one day pay it forward as soon as we are back on our feet... in the meantime thank you!
Please continue to pray for us and with us! Pray that those cells grow and multiply quickly and supernaturally! Pray for the decisions we have ahead about jobs- please pray for doors to open up for Emil. Thank you so much for everything! We love you all! God bless you 10 times over!
#scidsucks #scidwontstopthiskid #scid #scidawareness #bubbleboy #chemosucks #sebastianwillwin #SIRStrong #raredisease #Godisgood #toGodbetheglory #prayforSebastian #GvHD #bonemarrowtransplant #bethematch #beahero #bmtpatient #isolation #isolationbaby #ourlives #onedayatatime #growcellsgrow #thankyou #thankful
Thank you for being brave enough to share the story of your family. I am so thankful that you are able to lean on the Lord and that you are growing in your faith thru this. I always love the stories of "we don't know/understand" when we have been praying for healing and miracles! God can heal your little Sebastian before the chemo starts and he under goes all of this, but if one person comes to know the Lord thru this, what a wonderful thing you will be able to share with him when he is older. Your plan is wonderful and I'll be praying that you are placed in the path at just the right moment to be an encouragement people.
I want to reach out to everyone and first of all say Happy New year! And secondly and most important... THANK YOU! Because of each of you, your prayers, your generosity we made it through 2017! There are not enough words to express how thankful we are for how God has brought us through into a new year. A new year with new challenges but we also are looking forward to soon declaring and celebrating a life where Sebastian can enjoy the WORLD and that the WORLD can meet and enjoy HIM! We are humbly starting 2018 looking forward to some sort of normal in our lives and to be able to start providing for my family again. Thank you again! We will continue to share our progress. Sebastian will be one next month! I cannot believe it! This birthday won't be a big celebration in terms of party of but it will be such a joy to celebrate his birthday and then later on his Re-Birthday! here is the link to the FB I update on occasion: https://www.facebook.com/SIRstrongSCID