I’m going to go ahead and preface this with…IT’S LONG…didn’t realize how much had happened and how much I had to update so brace yourselves and get your reading glasses on 🙂
While it has only been a week since I last updated so much has happened that I am not even sure where to start. Wait. Hold that thought. More doctors just walked in. Ok…I’m back…story of my life 🙂 Last week the development of CMV was a total game changer. We had gotten into a pretty nice routine down in the PCRC, I knew most of the nurses, had developed a great friendship with the new SCID Mama next door (Kate) and in general was comfortable in our “new normal” of hanging in room 604. Those first weeks we had a healthy SCID baby which is much different than a SCID baby with an infection. Now that we are in the latter category things have gone from a test of patience to full speed ahead in a matter of minutes.
Last week it was pretty clear that little Riley wasn’t feeling good, she developed a few rashes and in general was more restless, pale and “weak” seeming than ever. More blood was having to be drawn to monitor the CMV and she started the IV antibiotic gansiclovear twice daily to combat it. It was now noticeable that she was sick as opposed to the usual “she looks and seems so perfect how is it possible that anything is wrong”. That was a hard thing to swallow…reality slowly began to creep up and I did my best to let it set in.
Thursday of last week my stepmom Donna came up to spend the night with Riley so I could go home and spend time with Presley. Leaving her when she was clearly not feeling well was so hard…the knots in my stomach became more complicated and a wave of guilt/worry/terror/sadness rushed over me. Luckily Deena (my best friend) had flown in, having her made it easier to suppress all of that and walk out of the hospital acting as if I was okay. About 30 minutes later one of the immunology doctors called to tell me that they would like to give Riley a blood transfusion. WHAT?! They explained that all of the necessary blood draws were most likely a big cause of her weakness and lack of color and that the transfusion would help with her energy levels and appetite…ok sold….whatever needs to be done to make her feel better and plump up for transplant. Deena asked if I wanted to go back and I said no…if you would have told me 4 months ago that I would get a phonecall telling me my newborn needed a blood transfusion and my response would be “okay, no I don’t need to be there, keep driving” I would have said you had lost your damn mind. It is amazing how much has changed. Terms, procedures and heavy medical jargon that would have terrified me months ago are now a part of daily life. Riley would soon feel better, be snuggled by Donna and my role as Mom was now to go and scoop up my precious little Presley who hadn’t seen me all week.
The transfusion went great…sounds scary but it really is just another syringe that gets hooked up to her IV pole and in goes the goods. The “goods” in this case being blood. Her color came back and she almost immediately started seeming more like herself. Riley remained in the PCRC throughout the weekend where they continued to monitor her rashes, weight and CMV levels. Grandma Carol (Chris’ grandma) was there with her Friday-Monday and made sure Riley was spoiled with snuggles while I did the same with Presley down in San Jose. That was the longest stretch I had been away from Riley, it was hard but being away from Presley is just as much of a strain and since I don’t know what the next few weeks hold I wanted to soak up every minute with her.
Chris and I had a scheduled meeting with the BMT team on Monday to go over details and consent to the “conditioning” regiment they have settled upon for baby Riley. We were to hear everything that was going to happen, could possibly happen and “there’s a slim chance” this could happen…needless to say we were terrified. We both felt sick on the drive up and while we’d hoped it was from a lack of food we quickly yet not suprisingly realized after lunch that the feelings were still there. At the meeting Dr. Cowan who has been described to me as “the grandfather of transplant”, “a rockstar” and “simply the best” settled in to explain to us the plan he and his team had developed. Because of the CMV we do not have the time to wait to secure an unrelated donor…the virus will soon become resistant to the gansiclovear and at that point we would be in big trouble. We need to get her transplanted, up, running and ready to fight like…well…yesterday. After mapping out our DNA Chris was in the lead as a 6 out of 10 match with me as the standard 5 out of 10…we had already given blood and were being worked up simaltaneaosly just in case but Chris was the closer match so pending all results they decided to move forward with him. Cool. Go time. Dr. Cowan then proceeded to lay out the immediate, latent, definite and possible side affects of the chemotherapy regiment that they had decided on. Ughhh. Not. Cool. Yes…we are ready to move forward, progress is good and all of this means we are one step closer to a healthy baby that we can take home but I don’t think it is possible to ever be ready for what we are about to go through. I think we both thought we had accepted the reality a little more that we really had…whoops. I’m not going to take the time to write out all of the things that may happen, partly because I don’t have it but mainly because it’s too hard and it doesn’t matter. This treatment is what HAS to happen to save her and that is all that matters.
We are strong. She is stronger. We will all get through it. I can imagine the main questions popping in to everyones minds because I know if I were reading this my mind would go there too so I’ll answer those…Yes she will be uncomfortable, yes she will feel sick and yes she will lose her hair. However…yes I will be here to comfort her, yes there is medication to ease the nasuea and yes her hair will grow back and probably be as wild and crazy as Miss Presleys.
Within an hour after the meeting we were moved up to the BMT floor, 7 Long is what it is refered the around here. We knew we’d make it here eventually but were thinking we had another month. Reality sure slaps you across the face once you’re up here. This unit is no joke…its strict, sterile and to be perfectly honest a bit scary. It’s all kind of intimidating but the PCRC was too when we first got there and it quickly began to feel like home so I’m sure 7 Long will too. It’ll take a whole nother’ post to describe the unit, changes and protocal that we have to follow up here…its crazy. The move was scary, the rushed pace in which it happened amplified that but seeing Riley’s face when we walked out of the hallway and how amazed and curious she was about the new scenary eased the fear. That sweet little baby hadn’t seen anything but the inside of M604 for 7 weeks and to say she was fascinated would be an understatement. Equipped with the cutest little Donald Duck medical mask you’ve ever seen her wide eyes followed the lights down the hall and up the elevator to her new room.
All of our things were left in the ante room as they needed to be sterilized before they could enter the main room (as I said I’ll do a post just to explain the space later), we got introduced to some new staff members and nurses and POOF just like that our next new normal began. I wanted to get Riley chalk full of fomula and off to sleep because the following morning she was having surgery to place her broviac port and so would be unable to eat after 2 a.m. Not feeding a 2 month old baby after 2 a.m.? Umm…torture much?!…maybe more for me even than her! I was anxious as I laid her down but she did really well. She was the perfect picture of PISSED when she awoke at 5 demanding a bottle only to receive cuddles but she succumed to a mixture of my bouncing/tone deaf singing pretty quickly and slept in my arms for the final hours before surgery. I of course laid there wide awake and still as could be in sheer fear of waking the sleeping beast on my chest. I should have known better then to expect her to struggle…she has been such a trooper through it all I’m not sure why I expected the worst…I guess because I am Mom. Once again she amazed me and even slept all the way through the covered bumpy wheelchair ride and right on into the surgeons arms as I passed her over. Surgery went very well, uneventful. She woke up in the PICU, bipassed any and all complications and made sure EVERYONE in the place knew she was none too happy about not having a bottle immediately shoved in her mouth. We made it back up to 7 Long and about 45 minutes later I got the ok to feed her. That little cricket sucked down more formula than she ever then has shot me a mean stink eye and went straight to sleep. Four hours later she woke up with a big ol smile and all was forgiven. Picking her up was a bit like handling tangled christmas lights…this kid has got more cords and wires than I could have ever imagined. While our room is bigger our mobility span is much shorter now that shes attached to her IV pole 24/7 but as always she remains content.
Yesterday was a very long day seeing as I’d only logged about 45 minutes of sleep the night before only to be faced with Riley’s surgery in the morning. Luckily Chris was able to come up and spend a good portion of the day with us. He got his physical, veins checked and was cleared to be the donor pending CMV results. I was freaked out. Here I am now looking at my week to come…Riley will be starting chemo, Chris would be getting twice daily injections to boost cell production which have the potential to cause serious discomfort meaning Presley will most likey be staying with my Mom so Chris could rest. We would all be going through so much and all be seperated. As Mom, that just didn’t sit well. I am used to taking care of all 3 of them and being able to “fix” everything…for a few moments it was all too much. I lost it. Thank goodness Chris was with me and is the man that he is because without skipping a beat or having a meltdown of his own he assured me we would make it, as we always do, we would make it work. Ok. Back to calm. As I explained in my last update the donor must be CMV positive so donated cells already are trained to fight the infection. Seeing as CMV is present in almost all adults, passed through saliva and the fact that I am CMV positive left us basically NO doubt that he would too…I mean we have two kids, the jig is up…clearly we’ve kissed…how could he not have it? So we were good, we had a plan, we worked out a basic schedule, we had dates…progress, one step closer to home. Hours later after Chris had left Dr. Cowan came in to drop off copies of all the consent forms and also dropped the bomb on me that Chris was CMV negative. Shit. Now back to me as a donor. It doesn’t really matter, clearly we are both willing to do whatever to save our baby it’s just the back and forth that was hard. Another big piece of information I had to hear alone and another thing Chris would have to hear second hand over the phone. We had both thought things were finalized and had really embraced moving forward. I was so upset when I had to tell Chris because I know as a father he was thrilled to do this for Riley, us Moms carry them around for 9 months-it was refreshing for him to be able to fill the role as donor. Once again, he calmed me and reassured me that everything would be okay. Honestly he was dissapointed but comforted by the fact that I do have CMV and that we are still able to move forward with the dates as planned. While now he won’t be the one hooked up to the machines he will be right there at my side getting me through it as he does with everything else.
We have learned that everything is subject to change but as of now…what I have is this. Riley starts Chemotherapy on Sunday the 29th. I start injections Friday the 4th. The harvest of my cells will be Tuesday the 8th. Transplant day for Riley Wednesday the 9th. I will update as I find the moments to sit and write.
For me writing is theraputic but honestly this last week I had lost my words. It was all too much, sharing our journey with everyone through these entries makes it all feel real and I wasn’t ready for reality yet. I am ready now. I think. I replay Chris’ assuring words in my mind “One step closer to home babe.” Okay. Yeah. I’m ready.
A big thank you again to everyone for everything. Positivity, Prayers, Well-wishes…Wanted, welcomed, appreciated.
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