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Post Transplant Updates

One of many milestones :) one whole week post transplant and our little guy is doing so well!

He did come down with his first (of many possible to come) infection and spiked a fever. They treated initially with two different antibiotics, while they wait for blood culture results to show signs of certain bacterias. His cultures were negative for some really bad bacterias, so he is down to only one antibiotic now :) knock on wood his fever hasn't come back. The downside to being sick on top of the transplant is the lack of energy....just like if you or I get sick, all we want to do is lay low in bed. But there are some big physical setbacks that happen so quickly, especially with the little babies. Jace was only inactive for 1-2 days, and his muscles significantly weakened. We are working with physical and occupational therapy to maintain his strength throughout the transplant period, both in patient and out patient.

News

So many things have happened over the past few days.  Here is a recap!

Transplant 9/7/2017 Day 0

We had a wonderful blessing of donor cells prior to the transplant.  The hospital Chaplin came by to meet Jace on our day of admisson, and he stopped by again on the day of the transplant to say a quick prayer.  The transfusion of cells happened very quickly like a normal blood product tranfusion, and Jace handled it very well with no immediate reactions.

He also received a very special gift from the child life department today.   It's a bouncer!  This is going to be so great for daily activities outside of the crib when he is feeling up for it.  He loves it and it's great stimulation physically and mentally. 

Day+1 and Day +2

Day 4

    Yesterday was the first time Jace has ever felt sick, and that was tough to swallow.  But as he started feeling the effects of the Chemo, I thought to myself that even if he was a thriving healthy baby, it would still be hard for me to see our baby sick and feeling uncomfortable for the first time…..  So in a way, I felt blessed that our first experience was in the hands of the best nurses on the west coast, and that they were prepared for any reaction he could have had. Jace started his second drug treatment called rATG, and it is combined with a chemo drug called Cytoxan. The rATG targets Jace’s T-Cells and destroys them, causing him to feel flu like symptoms: nausea, vomiting, diarrhea, body aches, chills, fever, etc. Jace will have 3 days of this combination of drugs, and before you know it, transplant is going to be here!

Stanford Update.

Day -8
Today is the second day of chemo and Jace is handling it great. It's to be expected that the first couple days they are relatively unaffected, and as the treatment progresses, they start to feel more icky. With this transplant in particular, his entire (or close to it) bone marrow will be wiped out, causing him to become transfusion dependent. That means he will be consistently receiving platelet and red blood cell (RBC) transfusions regularly until his transplanted marrow starts growing it's own cells. So thank you so much to all you blood donors out there!! Every drop counts!

Treatments are all done intravenously (IV) through his central line (CVC- Central Venous Catheter). This allows quick access to the main blood stream without needing to *painfully* insert an IV catheter each time. All meds, transfusions, and chemo drugs are able to go through the CVC, along with fluids and IV nutrition if needed.

August Updates!

Hi all!

We want to start off by thanking all who have helped us in all the various ways, physically, emotionally, financially, and through prayer. Andrew and I are in awe of the love, support and faith of those in our immediate and extended communities. We can't believe how many people surrounding us know our sweet baby boy, and many whom we have never personally met. We are looking forward to the future when he is able to meet everyone in person, and spread many overdue hugs :)

New Date!

So we have been through both ends of the spectrum as far as planning out our lives. Our initial admit date was this past week, however due to unforeseen circumstances being donor #1 became temporarily unavailable until October, the procedure will now be set back.

Gearing up for procedure....

We have had a very busy week so far. Jace is continuing his pre-workup exams and will be undergoing a few more evaluations at the end of this week. He needed a platelet transfusion this week because he has been averaging a transfusion every 10 days or so. His platelet counts were the lowest they have been at 5K! So we definitely needed to transfuse when we were there. We are looking forward to getting his central line placed because it will make IV treatments painless for him. Since he has had so many labs drawn and so many IV’s placed, his veins are not able to heal fast enough and it is becoming harder to get the IV placed for each transfusion. Hopefully we will only need a couple more with an IV, then his central line will be placed on 8.8.17.  If you have been following his procedures the updated list is up at original procedure list post.

Everyday Miracles

7.16.17

Milestones are everything with a little one, and Jace is such a strong growing boy. He started rolling over this week! He brings us so much joy and it is amazing watching him grow each and every day.

We have had quite a bit of progress made with our timeline. Jace’s donor has agreed to go through with the stem cell donation, and Jace is now going through pre-treatment baseline tests. These tests are only valid for 30 days so the doctors are fairly certain his admit date will be August 11th. He has already met with an ophthalmologist and an audiologist, and has been cleared from both. He still needs an MRI and CT scan, EKG, ECHO and many labs before we are able to move forward with the transplant, but everything is looking promising.

July Updates

7.6.2017

Happy belated 4th of July to all!

We spent our 4th of July up at Stanford with Jace receiving another platelet transfusion. Luckily the holiday weekend in the bay area meant there was NO traffic....the freeways were a ghost town, and it was quite lovely :) We received a phone call from our stem cell transplant coordinator in regards to Jace's bone marrow transplant. If, and this is a big IF, all things go according to plan with one of the donors they reached out to, Jace could be admitted and get his transplant by mid to late August!

This is great news! It is also terrifying news.... But the sooner we can start the process, the sooner we will be done with it. We have been absolutely blessed with an amazing, strong, happy baby boy, and I know that he will get through this transplant journey with flying colors.

Follow Up Appointment!

We had a follow up appointment with three of Jace's specialists on Tuesday. His platelets were at a good level (122K), so we did not need a transfusion. We will be able to monitor his blood work from a local lab at home, and should we need a transfusion prior to our next appointments, we will make a day trip up to Stanford. We are scheduled next week for another IVIG, so if he needs platelets, both treatments will be done the same day. His health remains steady, and isolation is proving to keep him healthy up until the start of his bone marrow transplant which is crucial.






 
 
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