Day +21 Excitement!

SAMs ANC has continued to slowly rise and is now above 1.0 which is fantastic! Over the last few days, we have transferred almost all of her meds from iv to oral which for her means "g tube" and we are now facing the possibilitilty of going home tomorrow! Her platelets unfortunately were a false alarm of recovery and have now been dropping steadily again but this is not atypical of transplant as they are usually the last line to recover. Unfortunately this just means more transfusions and more worrying as they drop to avoid any bump or bruise! Tomorrow she will most likely receive a platelet transfusion in the morning and then they want to observe her for any adverse reactions through the day. She has been getting a red rash all over her body with red blood and platelet transfusions since day 0 but so far no other adverse reactions-which is good. They pre medicate her with Benadryl to help with this.

SO as the prospect of going home looms I feel an utter mix of emotions as I look around this hospital room that we have spent 29 straight days in. On the one hand I want to sprint out of here and never look back and play four straight hours of leggos with Kaeden hugging him until he can't take it anymore. On the other hand, I'm petrified to carry little Sam out of this isolated door where she has been monitored and hooked to machines 24 hours per day, with pre measured meds brought around the clock, feeds administered they her g tube throughout the night, blood and nutrition labs done daily to track every change... At times you resent this constant interjection but now I also realize how much anxiety I will feel initially without it...

Now it will be up to us. Measure and track all nine meds are given two to three times per day. Make sure if she vomits within thirty minutes to re-administer meds. Change feeding bags, tubing, and pump throughout the day and night to give nutrition. "Hep lock", flush , and clean her picc line everyday and ensure it never gets wet. We will initially be seen in the outpatient clinic three days per week so I know we won't feel totally on our own and they will closely follow her progress.

But just as we were scared but anxious to start the process of getting to transplant initially, we are now scared but excited to get home and get into a groove with our new daily routine and responsibilities. I'm sure we won't be perfect, but I hope we can do what we need to keep Sam as healthy as she can be to now reach our next goal of day +100.  This is a big milestone in the transplant world equating to many decreased risks.

Whether it ends up tomorrow, the next day, or the one after that, I know we leave here stronger than when we came. Thanks to Super Kaeden ("kee kee" as Sam calls him) Sam has decreased pain, a growing immune system, increased strength and stamina (she's walking more), and most importantly... her smile back!!!!

So we bid our "prison of hope" (Jon Ackley :)) farewell and continue to the next chapter of this journey. Thanks to EVERYONE who has helped us come this far! Really feeling Sammy strong tonight!

Day 18+ -- Chugging along

So overall Sam continues to improve. More energy, strength, and spunk returning:) More difficulty getting her to nap and go to sleep which is more back to our good ole days :)

Her numbers are fluctuating more than I would like but the docs seem generally pleased. Her ANC has remained above .5 fluctuating between .6 and .8 the last few days. Her hemaglobin has dropped to 8.1 so she will get a red blood transfusiontomorrow. This now becomes more tricky though bc before transplant she was A neg but kaeden is A pos. She will eventually be A POS now too but this takes some time so in the interim they will transfuse her with O neg which is universal but we have never done this. They will also be monitoring this moving forward to make sure this switch happens smoothly. So transfusions will just be a little less straightforward as she needs them over the next few months.

Our original transplant doc is back on rotation this week and is really hopeful to get us discharged Friday!!! Today she took Sam off of her last two iv antibiotics and tomorrow we will work to switch over her cyclosporine to g tube as well. She is still on a PCA iv pain regimen but we have almost stopped her continuous morphine. The two main challenges right now are her GI tract and bottom fissures still cause her great pain. By the time the pain meds kick in from the "push" that I hit on her PCA or from an oral pain med, she is already sweating, shaking and will hold everything in. The pain docs are working with the pharmacy to try to get a quicker acting non iv pain med we could put under her tongue or on the inside of the cheek that would be absorbed through the bloodstream if I can get her to cooperate:) The other issue is she has corona virus. This is a common virus/ cold that typically isn't a big deal but her immune system is still new and fragile so it takes more for her to fight it. The coughing and runny nose all lead to more vomiting for Sam. Besides the fact that we want every precious calorie of pumped breast milk or food to stay with her thru her g tube , if she throws up less than thirty minutes after taking meds, we have to give them again. When she takes about 9 to 12 meds thru her g tube throughout the day and vomits 3 to 4 times on average per day, you can see odds aren't always on our side in avoiding this scenario.

Again though all in all still good news and things continue to move in the right direction. Going home is crazy exciting and scary at the same time and I know in some ways will be more difficult for us (managing germs kaeden brings home, administering all day and night feeds/meds ourselves without nurse help, anxiety over falls when platelets are low etc .) but I can't wait to be able to see Kaeden every day after school and kiss him goodnight!

Will post later this week with hopefully more information about going home as we learn it!!!

Wanted to say thanks again to all who continue to love and support us but special thanks to Andy for fostering our cats all this time and keeping them until docs say its safe for Sam and them to coexist again:) This has been such a huge help and Kaeden loves to know they are close by and he can visit! The second thank you has to go to my mom, our Baba who quit her job and moved here in a heartbeat and has been by our side ever since the first week of diagnosis. I don't thank her enough each and every day as I should. She is my rock and our kids are so lucky to have her!!!! I always felt the saying "it takes a village" was so appropriate in child rearing, but after this experience, I've learned in times of need that "village" is exponentially more important and we have been so lucky to witness our village grow and grow!!!

Day + 15... Her "Own Way"

Sam's ANC dropped for the third day to .42 today. This is a relatively small drop but still not what we were hoping to see. Waiting to see the docs today but sounds like there are differing opinions amongst the transplant team as to whether to start a gcsf trial or not. This is a drug that can temporarily boost white cell production. The hope would be it would give her immune system a boost and then she would continue making her own white cells (neutrophils specifically) in her own. The downside is it's not that specific in its ability to target and given the theory behind a lot of idiopathic severe aplastic anemia is that it is an autoimmune disorder, one could potentially also trigger this "sleepy" monster back "on." I am oversimplifying medically but this is how I have conceptually grasped the dilemma. Again, we'll see what the docs day today :)

The good signs are though that Sams platelets are holding and even rising a bit on their own without being transfused for over six days. She could never go more than three to four without signs of internal bleeding before transplant. She is also making more and more retic red cells which are baby red cells indicating that hopefully her red blood cell line will rebound or hold steady soon as well. These are good signs of engraftment despite the dropping ANC so we haven't been given any indication they are fearful "the marrow didn't take" but Sam is just not following the typical path of engraftment. One of our favorite nurses stopped by this morning after seeing in her notes fr home our g tube balloon burst debacle and her dripping ANC, she reminded me that Sam has just been "extra special and unique" this whole way so she just wants to continue to engraft in "her own way too!:)"  As long as her own way leads us to a safe ANC level with some working immune system and hopefully no transfusion dependency in a month or so, we don't care in what order we get there:)

Another good sign is she has more energy the last two days. She has had longer periods of active play and is walking more! Yesterday she "sat" on a soft bean bag chair for the first time in over a month because of the fissures. They are still very painful for her but looking a bit better too! Here's a pic of smiley Sam:) I can't wait to have her back on a full time basis! Go Sammi grow!

As usual thanks again for the outpour of support this week. A new sign up for food was organized at Kaedens school with meals coming until the end of the school year! Adorable gifts and toys for both kids and drop offs of magazines, fudge, and chocolate for me at the hospital! Brandon, my mom, and I couldn't say enough about how all these small and large things have helped each and every week in a practical, time -saving way as well as constant morale boosts and smiles:) Seriously feelin the love! Thank you!

Day +13 Speed Bumps and Potholes!

Yesterday SAMs ANC almost tripled to .69 and we were thrilled to see this. Today it dropped a bit to .55 but the docs said a little bouncing around this week is expected but they hope that by next week we will get to 1.0 ANC and consistently trend above that! Typically white blood cells rebound first, then red blood, and finally platelets. If/ when we return home in a few weeks she will most likely need transfusions for several months more. So she will keep at least one of her picc lines in addition to her peg tube and we will again return to clinic for blood draws, transfusions, and nutrition monitoring at first 3 x per week. As things get more stable, hopefully that will decline to weekly, bi weekly and then monthly! I can only imagine how we will hold our breathe at each visit until we receive reassuring results that things are still looking good!

Yesterday also proved to be one if those days that I'm unfortunately reminded that although I think our docs and care have been great overall, a teaching hospital system with so many rotating residents, fellows, attendings on night vs. day shift... Information can get lost in the shuffle and miscommunication can happen. At 5 am, SAMs g tube balloon burst in her stomach and it again came out. The on call attending for interventional radiology did not provide specific enough instructions to the next attending or the nurses on this floor about what to do. It resulted in hours later nurses trying to insert a "placeholder" catheter in SAMs g tube site but it had already started closing and so she was bleeding and screaming/ shaking in pain. The nurses did not feel comfortable continuing with this and neither did we!

The transplant team were strong advocates  for us and we eventually got a spot downstairs to have it surgically replaced yet again. After the procedure, we inquired with the surgeon directly about how to avoid this sort of miscommunication in the future. He was extremely rude and insensitive in his response. Given Sam is going to have this g tube for the foreseeable future and this is also the dept that handles placing and removing picc lines we were torn as to what to do, but in the end decided to call the patient relations review number to share what had happened and have them help tease out what can be put in place to better serve patients in the future. We stressed we are not looking for a punitive process (although I hope I never see that specific surgeon again) but that we really do want to have a better system in place as SAMs care requires accurate and prompt communication and team care amongst several departments. The woman whom I spoke with was very empathetic and understanding and is supposed to follow up today. We will have to wait and see if this approach truly proves beneficial. There have been other times though we have had issues with on- call docs giving inaccurate information to us as well as covering weekend docs not having the full picture etc. so we hope moving forward we will at least get some feedback as to how to ensure her continuous care is more seamless.

Support from friends, family, and kaedens classroom community has been so touching and helpful as always but a few highlights: meals organized by kaedens classroom "room moms" continue to be delicious and much appreciated (pasta, calzones, Mediterranean food/ kebabs, soups, cookies etc)! I have been joking with Brandon that Kaeden's going to refuse my cooking once I'm home again and he is then subjected to mommy's "b list fare" again:) Also family in town helping to do a million things around the house has been awesome as well as Easter basket deliveries and toys etc.! Here is a cute picture of Sam "reading" the get well card made for kaeden and Sam by his whole class!

 

 

We can't thank everyone enough for all of this during our long journey of hardship and challenge! Keep us posted!

Day +11... Slow and Steady!

So Sam's ANC has steadily risen each day. Today is .29! Again, when we reach .5 consistently, they would medically call this successful engraftement. When we reach 1.0 they will do a blood test that measures what percentage of her cells are hers vs. Kaeden's. The more the donors the better and often this is 100%. We have also begun testing her IGg levels which measures antibodies. If these are low, she can recieve injections to boost this. She will slowly be taken off some of her antibiotics this week and closely monitored for infection. Next week, if we don't have any major GVHD (graft vs. host disease) flare ups, we will slowly wean her off these iv meds and alter them to oral medications given they her g tube. Next week we hope to slowly start weaning her off pain meds too if her fissures and gi tract sores are healed. All in all, it's possible if we stay on this track, we may be able to get home around day + 24 to day + 30!

Another great thing is when we reach above .5, we will be allowed to go out of the room on our hospital floor. Only in the evenings when there are fewer people around and she will have to wear a mask, but it's something! Unfortunately though I think Sam will think this means we are going home and it is emotionally very tough for her when we return to the room. When she has had to leave the floor to go to the surgical floor twice thus far, this has been our experience. She looks at me with those sweet blue eyes and says through her mask, "car? Go?".... When the response is not yet, she asks again and again and then cries:( Perhaps though, we will get her more into a routine and she will start to enjoy her short trips around the floor! I'm also hoping this will encourage her to keep trying to walk with support in short spurts. Right now we have worked her ability to stand with support to two to three times per day for 5 to 10 minute intervals.  Another  mom whose daughter went through the same thing also wisely suggested to alter my language a bit in responding, "soon  or in a little bit." This way she knows it's not right now but that it will happen in the future.

Kaeden came to visit yesterday for Easter and while Sam was sleeping, he and I had a lunch date in the cafeteria. These visits help my spirits a lot, but are also tough when he wants to stay and we have to say goodbye. He has loved to have phone chats every day about Sammi's numbers going up and hearing how his marrow is fighting off  Sammi's disease more and more each day.  The nurses are now all familiar with our face time chats at bath and story time at night too:) Sam holds the phone and has great focus as she listens to Daddy reading a story. It's quite sweet to watch!

So our cautious optimism continues! Still taking it one step at a time but the slow and steady ANC improvement is really a great first step!

Thanks to all our friends, family, and Catherine cook school community for your continued love, support, and encouragement!

Day + 9... We have liftoff!!!

Good news. Sam's ANC (measure of immunity) went from 0 to .16.... This is still dangerously low and it is not considered engraftment until it is at least .5 for three consecutive days, but it's our first good sign that Kaedens white blood cells are making their way through her body and trying to fight to take over. This may be the only "fight" I'm ever thankful for and encouraging between these two:)

Two of her many  iv medications are meant to help limit graft vs. host disease or gvhd. She will remain on these for some time even when we return home but we will administer these thru her g tube at home . Her mucusitis has actually gotten worse causing a lot of vomiting and discomfort. The doctor warned me the weekend could actually be tough because as white cells start to run around her body, they can actually cause more pain, mucus, tenseness as part of the healing process. If the counts continue to rise, we should be on a more comfortable path by Monday and be able to start physical therapy and help get some of her strength back. I'm anxious to get this little girl pain free and moving ASAP!

So although it's not a sure thing yet, we are cautiously optimistic. Come on super kaedens marrow.! Keep fighting and let's get your sister back!

Here are two pics of Sam and I getting comfortable with her new "do." I took the standing shot and showed it to her saying "Sam Sam"... She just kept pointing at it and saying "No ... Baby" meaning she thought it was a picture of a baby, not her:) We haven't picked her up in front of a mirror yet mainly because her medication caddy is too big to make it in the bathroom!:) I'm sure she'll get used to the new look of "Sam Sam". After the initial shock has worn off a bit, we're already better able to embrace it with each passing day!

Day +7... Hair Today, Gone Tomorrow...

On day 6, Sam woke up and her pillow was covered in hair. By today it's pretty much all gone. I wish I could write that our rational side won out here... After all she's gone through and the number of things that still cause her pain, this is not one of them, but as her soft, fine, baby curls fell to the ground throughout the day, so did our tears. Something about it is just hard to swallow. The Sammi I picture in my mind: smiley, chubby, and goofy... Is not the one looking back at us.

We know she's still in there and we can't wait to have her back, but I think that's just it... It's one of the final exclamation marks reminding us that this disease has taken a lot. Some days we just have to let ourselves acknowledge this a bit.

We warned Kaeden over face time with a fake, cheery smile that the yucky chemo made most of her hair fall out. He didn't miss a beat and responded, "well that's ok...bapa and Sammi are just going to be twins now!". Brandon and I laughed out loud and I so wished I was talking to him in person at that moment instead of looking at him through a screen so I could give him a big hug. That kid can snap me out of anything and put a smile on my face in an instant ... He's right ... It's just hair. It'll grow back and she and bapa are twins! :)))

These are "before and after" shots. I hope those soft little curls in the back return soon and Kaeden's super marrow starts to kick butt so we can get our Sammi back!!!