Mustering Patience....

       Sam's Monday clinic appointment was her Day +102. This is a great marker in post BMT but for Sam, a bit anticlimactic. If you live over an hour away from where you have your BMT done, you usually have to stay in a Ronald McDonald house or an apartment until this date. This is due to the high risk of serious infection with a suppressed immune system that can statistically take place during this time period. This is another way that we have been "lucky" in a sense during this process. We live less than 5 miles from one of the "better" transplant hospitals in the country. This weighed heavily in our decision when we received second opinions from Milwaukee WI and Cincinnati pre-transplant. If we had chosen either of these options, Sam and I would JUST be coming home NOW. I can't even imagine that at this point! Being in a comfortable and familiar environment with Kaeden and Brandon on a daily basis is definitely some of the best medicine for both of us! 

      At Monday's clinic appointment, Sam's platelets, WBC, and several of her chemistries were "down a bit." I was surprised to see this because "knock on wood", her colitis symptoms have FINALLY been improving over the last week. She has not had diarrhea for the first time in months! Her EBV numbers were also slightly down from the week before which is great. I am VERY hopeful that her platelets especially will rebound next week and that this was just kind of a "fluke". We work really hard on her nutrition but low phosphorus, magnesium, and potassium are unfortunately very common post-transplant. We have been utilizing her G-tube to supplement as well as transdermal approaches with bath salts, magnesium lotions, etc. 

     The hardest challenge at this point is maintaining patience with the process. As summer is in "full swing" and we try as much as possible to "go about daily life," it's hard to not to start to feel "antsy" and frustrated by all of our limitations for Sam. I want to take her to a museum with her brother, let her play outside in the grass/dirt/sand, go on a vacation somewhere, enroll her in a toddler class, even just taking her inside a grocery store would be a start:)! In some ways, especially with her G tube tucked under her shirt, and when her PICC line is covered in clothing, she just seems like such a "regular kid"(minus the bald head and dark unibrow growing from the cyclosprine:) I only wish she could experience more "regular kid" stuff. It almost broke my heart the other day as we drove past The Little Gym in Chicago. This is a place I have taken both kids to during what seems like a lifetime ago. Sam saw some kids swinging from the rings through the window while we were in the car at a stoplight. She made an adorable high-pitched "OOOOH!" sound and said "Sisi PEASE!" meaning, "Sam Please?!". I know she would have a blast there. She is a seriously fun-loving and hilarious little person full of life.... But, for now... car rides, walks in the stroller, trips to the hospital, and a trip to a vacant park is all she knows. 

         In the grand scheme of things, we know that we should be SO thankful for where we are and how well overall she is doing. Spending every minute with her every day is truly a joy, but as she starts to seem stronger and better, it's hard not to ache for more. I'm sure a good Chicago winter will cure us of this "antsiness" though:))) Thank you to all of you who still follow our journey. I can't wait to share a picture of our first family trip post transplant next year!!!

        

Day + 96...

      We haven't written in awhile because life has been even more hectic than usual over here. We had a sewer line break outside of our house due to "the city" doing work throughout our neighborhood. This caused extensive damage to our house in several rooms and two levels. After a tremendous amount of research, pleading, and coordination to get the clean-up/construction work under way ASAP, it then took a lot of brainstorming and planning as well to find a place where Sam could stay during the work where she didn't have to fly to, wasn't a public hotel, and didn't have any pets/other kids germs etc...:) Luckily we are almost done with most of the work and we were able to drive to Brandon's family's house. They were kind enough to find a pet friendly hotel to take their sweet dog too as well!!! Very much a life saver for us!

     Although it was a nice change of pace to get away for a few days, we returned just in time for 8+ hours of clinic on Monday. Sam needed an IVIG transfusion to help boost her "passive" immunity. Although she has an adequate total number of WBC (white blood cells), her b cell and t cell line is still depleted and will be for at least a year. This injection takes 3 - 4 hours and she has to have "vitals" taken every 30 minutes. Her EBV numbers have gone from 6,000 to 12,000 to 14,000 and this week to 11,600. We are still watching these VERY closely and every week I anxiously wait for the phone call on Tuesday to see where we are at. I'm not sure this feeling will ever fully go away. The fear, the waiting, the lump in the back of your throat...

    From there, we had a follow up with the GI doc regarding her ongoing colitis. We are starting her on a new medication and if possible, slowly taper her steroid down more. When I asked the doc, if she can give any indication as to where this is headed, she responded, "that she hoped Sam would grow out of this as her body continues to adapt to its new immune system and that we won't be having this conversation in 3 or 4 YEARS!" Unfortunately, how they typically treat colitis is the exact opposite of what we want to do to avoid "activating" the EBV in her system. Typically immuno-suppressants in conjunction with antibiotics are used to treat colitis and thus the GI doc would want to "up" her steroid and cyclosporine to see if there is any positive impact, but given the EBV is the more dangerous factor and the colitis seems to be getting slightly better or has at least stabilized, we would like to taper both of these down as low as possible to allow her limited immune system to keep the EBV stable or hopefully decrease.

      As day +100 approaches, this is typically a significant marker in bone marrow transplant recovery and we are very thankful that this day has come for Sam! In many ways, it is almost hard to believe this happy, energetic girl is the same one that didn't eat, walk, or talk for months and tolerated an unthinkable amount of pain. At times I feel like I will never forget one minute of the journey and other times, it feels like a blur. Overall though, we truthfully did hope to feel less anxiety at this point about the EBV and the ongoing colitis. For us, this day will feel pretty sweet for sure, but it only makes us more anxious to get to the one year post BMT marker and be able to live a life with more freedom, fewer life restrictions, and less fear! Someday.... Someday...

Up and Down...

Sam's Monday clinic visit showed that her CBC counts are still holding steady. Her "tummy troubles" have continued but seem to be improving slightly with less cramping and pain it seems. We have a follow up appointment with the GI team on July 14th. If there is not significant improvement on her current antibiotic regimen for the colitis, we will have to see what they recommend for the next step.

The "not great news" from the week were that Sam's EBV titer numbers increased from the week before. Not to a "treatment level" yet but still another anxiety provoking call for us. Due to this, we went down slightly on her cyclosporine (one of her immune-suppressing) drugs to help allow her body to attempt to deal with the EBV. We found a study in Baylor TX that is using T-Cell therapy at day +10 as preventative treatment for EBV, CMV, and adenovirus and having some great results. I contacted the researcher from this study and unfortunately Sam would not be eligible for their work, but she gave me the name of another doc in NYC at Sloan- Kettering in NYC who is also doing T-Cell therapy work. T-cells are one of the many complicated, interconnecting lines of immunity defense. In transplant patients, even with a "normal WBC", t-cells do not start repairing until at least one year post transplant.

Our transplant doc here stressed that Sam is not a "t-cell therapy" candidate yet, but that she would want to find an institution that would use Kaeden's t-cells as opposed to a third parties if we wanted to attempt this route in the future. This would help limit late onset GVHD. So the search continues on this front...

Another issue is Sam's magnesium, phosphorus and a few other chemistries have continued to be low. This was not the case a few weeks back and so the docs definitely think is a two fold reaction to the colitis/gut issues involving decreased absorption capabilities and the fact that cyclosporine in particular causes low magnesium in patients. Typically they provide oral supplementation for this but this often cause diarrhea and obviously this is the LAST thing we want to promote in poor little Sam right now so we have been researching other ways to help improve these mineral balances.

The last "negative" from the week was we had some water damage to our house two days ago after a big storm. We are assessing how to get the damage repaired and avoid any possible mold issues because this can be very dangerous for Sam. Unfortunately having any construction/repair work done with her here is also tricky so if anyone has any great restoration construction company recommendations?:)))

On a more "fun note" Uncle Kurt was in town this past weekend for a big triathlon in Chicago and had a photo shoot with some of the top triathletes in the world. Kaeden got to sit in on the shoot and wore his favorite "super hero" outfit taking some professional shots with both the winners of the male and female elite races from the weekend. He was pretty pleased with himself and we can't wait to see/share these pics:)

Again, overall Sam is still a happy camper most of the time with a goofy sense of humor. We really do hope that these EBV numbers hold steady or decrease over the next few months and soon we will be counting down to her one year post transplant date... It feels like forever right now, but we'll get there!!!