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!!!

Day +5....

Still waiting for engraftnent signs but again it's early for that with an average time of day +14 with sibling transplants. SAMs mucusitus is increased with more vomitting and painful coughing. She doesn't seem to have a lot of sores in her mouth so hers are more along the esophagus, gi tract, and her bottom still. Today, fine hairs are noticeable all over her pillow and the back of her gown so it appears she is starting to lose that soft, sweet baby hair of hers. I am worried she and Kaeden will have strong responses to this visual change but hopefully they will quickly glob onto our "bald is beautiful!" mantra:)

The other difficult thing to witness is how weak Sam has become. She is unable to stand and support herself without me supporting her or holding something. Even with support, her legs shake and she will quickly try to lay back down. We will start physical therapy in short spurts after we start to see engraftment and healing of areas of pain. I try to encourage her to try to stand a few times per day but sometimes she just isn't able to tolerate it. Kaeden visited this past Sunday and it was great to see him! Sammi was in a good mood that morning and with her brother's presence as a motivator, stood with my help for about 10 minutes before needing to lay back down. She wanted to play " I- pee" or I pad as we grown ups would call it :)

We also received these awesome shirts from a friend and previous coworker at Jump with Brandon. Seriously the acts of support and kindness have just kept coming and we are so touched and thankful for then all! The meals, gifts, rides, play dates, check ins, toys for Sam etc etc. are extraordinarily thoughtful. We truly do feel the love and this helps on the hard days to keep feeling Sammy strong!!!

Day +2 ... The Waiting Game

So after all the anticipation of the transplant day has come and gone now we wait.... The docs have helped me mentally break up the transplant process into phases. Each phase has different challenges and dangers.  First, the chemo conditioning phase which we just finished. Overall I think Sam did fairly well all things considering. Now we move to the second phase of post transplant but pre engraftment. More simply, we successfully got Kaeden's cells inside of Sam but now we are waiting for signs that they are making their way through her body and trying to work. We are hopeful this takes place about day +7 or +8 but this is relatively very early. Earlier than that, and the chemo is still too strong in her body and could kill off some of Kaedens healthy marrow. The longer it takes though, increases Sam's risk of acquiring more serious infections and complications than she currently has. The docs took her off the strongest of the four antibiotics she was on that was treating her g tube infection. Even though they know there's a good chance this infection could return, they were worried she would build up resistance to this strength of an antibiotic and they want to " have it in their back pocket" as they said in case we encounter something potentially more harmful over the next week or so. Currently the primary concern is about pneumonia. She will most likely get a chest x ray today or tomorrow to see if the fluid they are hearing is in her lungs or is more Mucusitis in her intestinal track and esophagus from the chemo. She is coughing and vomitting this mucus three to four times per day now so I am hopeful it is just this. She remains on continuous pain meds and has begun two strong medications 24 hours per day that are meant to help decrease transplant rejection. When we start to see fevers and rashes, they say this can generally be a good sign  meaning it is the beginning of engraftment and hopefully blood counts will start to rise soon after...

Kaeden returned home and has been in a lot more pain than we anticipated but after a good nap, a food and toy delivery from a classroom friend ( including a meal from his teacher), a videotaped get well message from another friend, and an in person mini play session with yet another best bud from school... He FINALLY started to seem more like himself this evening. It has been harder emotionally to see the pain this process has taken on him than we bargained for and it's hard not to feel some guilt at the same time that we are celebrating his donorship. The tears in his eyes as we wheeled him to the hospital elevator to go home as he had to come to grasp with the fact that Sammi and I aren't coming home quite yet was really tough on all of us. Time is a hard concept for a five year old and in his mind "he did it" and we should be back to  the way things were now... No one can argue with that desire! We know getting back to school next week will help him a lot . Brandon and I have been so thankful for the outpour of kindness and support we have received from kaedens classroom community and staff. Thank you thank you thank you!!!!

So now we wait... Wait and hope that  Super Kaeden's marrow starts to work its magic before a more harmful infection takes hold... Counting down the days.... Hours... Minutes....

Transplant Day!

Ok Sam just recieved kaedens marrow and so far no reactions! The more expected difficulties will come post engraftment which typically takes place in the next week. Rashes and fevers are very common first signs that kaedens marrow is beginning to try to work in her body.

Kaeden was a bit scared and had a very hoarse sore throat from the breathing tube when he woke up. He opened his eyes and looked at us as we told him we were so proud of him. I asked if anything hurt and he shook his head yes. He then asked in a sweet/scratchy vice , "Is Sam all better now ?" It really is an overwhelming emotional feeling to watch one young child sacrifice without question for another.

He has been recovering on the clinic floor eating sweets and watching tv. He is on morphine and had to get a dose of zofran after feeling very nauseous and dizzy when trying to stand. The transplant doc checked his hemaglobin and it dropped from 13 to 9 after the procedure which she expected and said no transfusion is needed for him if it's above 8. He will need to rest at least through the weekend and it will take a few weeks for his body to regenerate the lost cells. We are hopeful that he will bounce back with as much energy as we are all accustomed to super kaeden having.

Some people have told me today is National Sibling Day. We had no idea but can't imagine a more appropriate  display of the power of sibling love. As we look at our two babies, we hope  someday this blog and our pictures will help capture some of the  emotion and importance of today for these two  goofballs to look back at as adults. As my mom helps with Kaeden upstairs, my brother naps on a pull out couch in Sam's room and Aunt Bex runs errand all over the hospital to take care of all of us , Brandon and I are not only blown away by sibling love , but the feeling of family love as a whole...

Chalk today up as a victory in this battle.., a ways to go yet , but we are on our way now !!!!

Day 0 !!!!

Nothing is ever simple. It's 800 am and kaeden was just taken back for his surgery. He was his usual brave and energetic self. He was a big hit with the nursing staff in his Super Kaeden gear ( thanks again Jen!). He should be out of surgery in an hour to 90 minutes.

All four of SAMs picc line lumens are infected and she had a fever of 103 the night before last. Since it's all of her lines, they are assuming it is something systemic ( blood infection moving throughout her body) and have started yet another antibiotic.

There was a brief three hour period last night from midnight to 3 where the resident have the impression that there was a small chance this could effect our ability to carry out today's plan which sent us into a tailspin. Luckily our attending transplant doc emailed me back at 330 am stating we will move forward in all cases unless Sam was " septic" and had unsteady vital signs. This was very important since kaeden was to be at pre-op at 630am and he cannot be a donor twice . The last thing  we wanted was to surgically extract super kaedens marrow and not be able to use it!!!!

Luckily all systems a go! After kaedens marrow is extracted, it is quickly sent thru a centrifuge system removing certain elements and will be transported to SAMs room as quickly as possible. A doc and nurse then remain in the room and she is given kaedens marrow through her picc line like a transfusion. They take vital signs every five minutes and give the marrow as quickly as possible to avoid cell breakdown outside of the body. The guess is it will take about 30 minutes.

A lot of anxiety about all the transport and handoffs necessary with this precious material because with enough time in any hospital, the human error element becomes painfully clear.... But at some point the worrying gets so overwhelming , you have no choice but to let go ...

They call day 0 a new birthday of sorts so happy birthday Sammi! We hope more than words can express we celebrate this day next year as the day that saved your life!

More Access - Day 2

So on the last post, I mentioned how even though Sam had a "double lumen" picc line and a g tube, she does not have enough access to get in the crazy amount of medications she is on round the clock . Her chemo usually runs over five to seven hours per day and her pca for pain is continuous. Both of those take up a line so getting in her several other antibiotics every four hours, anti nausea meds, steroids, and pre meds has become an issue. In two days she will start cyclosporine and more medications running 24 hours continuous to help decrease her body's rejection of engraftment of kaedens marrow. Many of these can't be mixed lines with other meds blah blah blah....SO....

Sam's new "sidecar" running all the meds

This morning she was surgically given a second picc line in her other arm. It went fairly well and we are upstairs now and have started her chemo for the day. Tomorrow is her last day of ATG. She has had very bothersome itching in her diaper area and a bright red rash with diarrhea. We aren't totally sure what this is from but the doc's best guess is her skin is just breaking down very easily all over because of her low white counts and her body is excreting the "poisons" of chemo and all the other things going into her... She gets Benadryl, steroids, and Ativan for this...

Machines delivering meds to Sam as she rests

Kaeden will have a pre surgical tour tomorrow afternoon and get to ask questions he is nervous about.  We have kept him home from school this week to limit exposure to germs etc. Early Thursday morning he will arrive at the hospital for his bone marrow extraction procedure. He will be under general anesthesia for approximately 2 hours while they do about 20 to 40 needle  insertions in his back hip area to extract  200 to 250 cc's. He will remain on the outpatient clinic floor most of the day recovering and may be allowed to sneak down to Sam and I's room for a bit. It is difficult for Brandon and I to work out meeting both kids needs on that day as their procedures will be different floors etc. Baba, uncle Kurt , and aunt Bex will be here so there will always be a loving family  member near,  but as Mommy and Daddy you ideally want to be at both places at once because they are both our babies!!!

Keep on keeping on....

Chemo Day 4 - Return of Mr. Itch (Sun Apr. 6th)

Sammy enters day 4 of chemo today with a half way decent night.  The usual MO of overnight hospital stays is always littered with ringing bells from pumps that are empty, occluded lines, low battery warnings, line flush notices etc.  It's like trying to sleep in the bell tower of a cathedral.  Every 15 mins, BONG!

Day 4 is chemo is another round of Horse ATG, the second of four.  Thursday will be the stem cell transfusion itself.

Sammy woke up this morning a little more agitated and annoyed than yesterday.  We were somewhat pleasantly surprised with how she handled yesterday, but wary of that changing as this journey has many phases.  She seemed to be extremely itchy all over.  This is a fairly common side effect from taking morphine for several days.  She is now on a constant drip of morphine along with a push button "on demand" morphine shot.  There are a couple other small variables that may be causing the itching, so hopefully we'll pinpoint that sooner rather than later.

Sammy is also "raging" a bit from the steroids she's on.  The doctors warned us of this possibility, and we had little doubt Sammy the Incredible Hulkster would soon show her face.  She thrashes around in the bed when she gets annoyed or upset, so Mr. Itch isn't helping us out all today.

Chemo day 3 - The start of Horse ATG (Sat. Apr 5th)

Finished two days of cytoxan chemo. This is one that causes nausea, vomiting, diarrhea, and hair loss. In general, Sam did ok during these days. Definitely some vomitting each day and now some diarrhea. They aren't sure if her c diff is back or if it's from the chemo. If it's chemo related, it should clear up in a day. If c diff , it won't but she is already on an antibiotic for that. The hair loss typically takes place 3 to 6 weeks from when the medication is given. Baba and I cut some of her hair shorter in the back yesterday but are moving more slowly with the hair cutting. For some reason, mentally it's hard for us to pull the trigger on this one. I think its because it will be such an obvious difference for us. Sam has not been herself for some time now but losing all her hair will make this appearance even more striking for us. In our rational minds though, we know it's only hair and such a small thing given all she's been put through!

Today we start ATG chemo for four days. This is actually a horse serum. She will get this over six hours with nurses checking vitals every 15 minutes the first hour and then half hour after that. This is the "nasty" one that can cause high fevers, chills, shakes, itching/ hives, and sometimes seizures. They give it slowly and pre medicate with Benadryl, Tylenol, and a strong steroid. These are supposed to help ward off some of these symptoms but are matched with their own side effects. Our transplant doc warned especially that the steroid can make kids feel "great" and better than she has been...OR... Send her into frantic/ rageful states. Perfect for a toddler right ?! We are hopeful with the morphine and Benadryl, she will remain relatively drowsy through most of it.  Fingers crossed!

She will need a red blood transfusion tonight or tomorrow bc hemaglobin is down to 8 and her heart rate is now more elevated, even at rest. The only other current "looming" item is that they aren't sure they have enough "access" with her double lumen picc line and her g tube after the weekend to get all the meds in that they need. Some of them can't be mixed in the same lumen and she's on a continuous pca morohine drip that takes up one line. She will most likely have to be "put under" again and add a second picc line on her other arm:( I wish this would have been done when she was under anesthesia already a few days ago to replace her g tube, but hindsight 's always 20/20. 

This is Sam's current " med sheet". It's pretty ridiculous when we stop  and look at it. It equates to something being given iv or thru her g tube almost constantly round the clock. And to think before February, we had honestly only given this child Tylenol twice and she had never been on an antibiotic in her life....Times are a changin! 

Uncle Kurt heads back to LA today but  Aunt Bex arrives Monday night and Kurt will return Wednesday before Kaedens big day! He is excited to help his sister but obviously nervous  about surgery too. It will be a big day and we are so thankful to have these extra loving arms (and of course our baba:)  to divide between both our babies:)  

Another thank you again to all of you reaching out, leaving comments, organizing food drop offs, fostering our cats (Andy:), taking kaeden on special play dates, sending gifts for both kiddos, and always checking in. I  think our next to do will be to start a gratitude corner page for the website to make sure to personally thank everyone who has helped us in so many ways so far. This will also be a great way for us to look back and start our thank you notes  in the future! 

Checked In

From Stacy:

Sam and I are now checked in for the long haul.  It happened a day early after an ER trip yesterday morning to replace the G Tube that fell out.  We were staring at a huge hole with stuff oozing out the entire trip there.  They put her under and were able to surgically replace it but the surgical hole is just too large around the tube, so it won't close properly due to not having any white blood cells.  Infection and pain with the large hole will continue to be a problem to monitor until engraftment (when Kaeden's cells start working in Sam's body).

Sam is in a ton of pain right now.  She is sweating thru pillow after pillow and shaking.  The "Pain Team" took a look at her last night and put her on a constant morphine drip with a push button I can use whenever she needs more.  Kind of a scary responsibility...

Sam will start chemo today.  We will probably shave her head today or tomorrow.  :(

On the brighter side, I gave Kaeden a "bye bye box" yesterday with a few toys, a personalized book Lex helped me with, and two stuffed dolls with pictures of Sammi and me on the the front.

Super Kaeden!

 And this outfit!  He's ready to help his sister!  Another friend of ours had it made for him and brought it to me.  :)

Super Kaeden!

Tuesday Apr.2. - Starting Early....

Sammy hasn't been doing real well lately, and has been essentially unwilling to stand up or move much.  She mostly resides in her mothers arms.

We had planned on starting her perilous journey tomorrow by checking in for our long stay (30-60 days in isolation).  However, this morning, after getting up, Sammy's G-tube came completely out of her stomach, leaving behind a hole into her stomach the size of a half dollar coin.  The sight was gut wrenching, and it was oozing thick liquidity awfulness the likes of which was never meant to be seen by non medical personnel.  The smell emanating from this orifice was also never meant to be consumed.  We quickly rushed out the door, opting to not call an ambulance and drive their ourselves.

We called ahead, and made arrangements to be seen in the IR floor instead of dancing through uninformed ER docs and have the tube re-inserted by the right people asap.  When your medical bills can fund a new wing of the hospital you have special numbers you can call.  Thank god for insurance.  Thankfully, the insurance plan through Jump Trading is actually quite amazing.  So blue cross thank you.    

There was a chance that the Gtube couldn't be reconnected if there was something dislodged.  Thankfully, we were able to reconnect it.  Some debatethe over the area around the Gtube as if its infected or not.  She has so few cells her skin isn't healing at all, so it's hard to tell.  IR doc was amazing.  I'm still amazed at the variance in doctors here.  There are amazing ones and there are people here who shouldn't even be allowed to play board game Operation.

Gtube replacement was a small win as a second PICC line was the other option.  Two PICC lines limit you to IV everything, including nutrition.  Nutrition in IV form is spraying your liver with machine gun fire.

We are hospital now for good.  Chemo starts tomorrow.  She still has her hair, but we will cut it very soon.

Worse Before Better...

Monday I took Sam in for platelets. This is typical as she needs them twice per week to avoid internal bleeding. Luckily uncle Kurt arrived the night before and came with me as my mom took Kaeden to Key Lime Cove for a night for his "spring break" we had talked in January about a family trip to Florida but that will have to be saved for another year down the road...

Over the weekend Sam had started to show more signs of new pain. She has enough with her fissures etc. but this was new. Now she wouldn't stand or walk at all and she would whimper and cry even with small movements. We emailed the doc before coming in for platelets and she scheduled an ultrasound of her abdomen and interventional radiology consult.

We arrived at the hospital at about 815 am. Platelets transfused about 930 am and labs drawn. Sam fell asleep about 145pm finally and of course right at that moment is when they are finally ready for ultrasound. We finished the ultrasound while I lay next to Sam and uncle Kurt distracted her with videos of Kaeden bowling:) IR consult was not as kind. They agreed with transplant doc that g tube site is infected bc of her non existent immune system and to start a new antibiotic for this. They had to remove the "t fasteners" at the site which involved me laying and holding Sam, Kurt holding her hands, a nurse holding her feet, and the doctor pressing and removing skin from the infected site while clipping off the fasteners. It's heartbreaking to hold your toddler down as she screams " mommy all done" over and over but the hardest part for me is the accumulative effect. Each of these procedures or days in isolation is tolerable but these things happen every day. Each time she goes to the bathroom I cringe and hold her as she cries in pain. Each diaper change that follows as she shakes. Every picc line dressing change every week.

Sam's infected g-tube site

Our transplant doc is sensing my decreased stamina and gives me blunt heart to hearts each clinic visit. She describes and warns about transplant "she will get sicker... We have to make it worse before it gets better." Fevers, chills, shakes/ tremors, mouth sores, esophagus sores, bloody mucus, joint / muscle pain, hair loss, kidney/liver dysfunction, catheters, sterility side effects etc etc. She is not trying to scare me. I know only prepare me. I hear her every word but try not to let the picture she is painting form in my mind.  Sam is now finally asleep in my arms again but it's tube to go home. She stirs and vomits everywhere. The kind nurses help me clean it up and the doctor lends me scrubs for the ride home.

We head home for hopefully two days before returning to start chemo. I need to hug Kaeden one more time at least before I will rarely see him for months. If Sam's g tube site looks worse, a fever, or pain is uncontrolled by the morphine, we check in sooner but as of now, Thursday morning it begins. Kurt refocuses me in the car... Worse before it gets better, yes.... But at least that hopefully ends with better!