Friday, September 26, 2014
Some Roller Coasters Aren't Fun
After a slight rebound three weeks ago, Sam's WBC and platelets dropped again the week before last. These "up and down" weeks create a "love-hate" relationship with Mondays (our clinic days.) If the numbers are good, we feel a sense of relief for a week. If they aren't great, we worry endlessly until the next week, or the week after that, or the one after that for more promising news. This past Monday, was a "good one" in a sense that her platelets had doubled and her WBC were up slightly. Her "white count" is still lower than it was before starting the steroid taper and this could as usual be a "variety of things." We have successfully slightly raised her cyclosporine level after experimenting with a "new" method of administering this medication through her g-tube. We worked for hours with her transplant doc last week at different options and are now cutting a PICC line tube at one end and using specific syringes directly into her g- tube "button" without using the extension tubing. I then attach the extension tubing and administer the rest of the meds after this one. So far we have had promising results with this "workaround" and I'm very thankful for the doctor taking the time with us in experimenting with several different non-conventional ways to try to make this work for Sam. She had developed a slight rash around her neck and upper back similar to what she had a Day + 30 and it seemed no coincidence this was happening right after her anti-GVHD drug was dropping to a non-therapeutic level.
On a different note and away from the medical side for a change, this is Childhood Cancer Awareness month and I have come across so many great articles, posts, and first-hand accounts written by parents, doctors, and siblings on the subject. Below is a link to one of them that particularly hits close to home, While technically a different diagnosis, the rippling effect throughout the family felt before, during, and after treatment rings so true. Here is what she shares...
http://communified.org.au/the-emotional-costs-of-childhood-cancer/
We personally didn't blog about our time of diagnosis or the heart wrenching 3 1/2 months leading up to transplant for a variety of reasons. This was a time of crisis and fear and there were truly no words to share. For a long time I didn't even speak to my closest friends because I felt like if I started talking about it out loud, the fear and sadness would overwhelm me to a point where I would not be able to "come back" and pull it together enough to put one foot in front of the other and get done what had to get done. But, this brave woman above eloquently touches upon the emotional toll that is truly devastating.
While I feel most days we manage our "new normal" fairly well, there are days when the trauma of it all is more evident than others. You can't erase the vivid memories in your mind: The numerous Sunday trips speeding to the ER to get your toddler a platelet transfusion as she bleeds from her ears, nose, and mouth because she can't make it a weekend without. The feeling of powerlessness as you sign documents agreeing to "poison" your child in a way that will bring them tremendous pain and suffering, but the alternative is even worse. The days that turn to weeks and then months as you watch your once chubby and vivacious toddler stop eating, drinking, walking, and talking until they are laying lifeless and pale in a bed hooked up to perpetually beeping machines which you have grown to love because it means she's alive. The countless times you hold her down screaming while trying to convince her you REALLY are trying to help. The gut wrenching conversations with your "well child" as he asks you "when you are coming home?" and if his sister "is going to die?" and you can't truthfully answer "no." The resentment you see in him when he visits for 5 mins. in the hallway as you tell him that he is "just as important" but your actions can't help but somehow tell a different story. It's not an easy road. I could have never imagined what it would be like and don't expect anyone else to. It DOES change you in a way that any truly traumatic life event does, but we're learning it doesn't have to define you. The "regular" conversations with other people become easier. You start to feel less like you are walking in a constantly dazed state in an alternate universe that no one understands. You start to laugh more, smile more, and live more. There is something uniquely heartbreaking about childhood illness, but something equally amazing about how a child's will to live is so strong. I know as a family we will always have "scars" that run deep from this experience, but we also have two INCREDIBLE daily reminders of human resilience, compassion, and giving. I hope most days our minds are able to focus on this and are clouded less and less with the vivid memories of the past. To all those who continue to follow Sam's story... Thank you... It's a marathon, not a sprint and we feel you cheering her on all the way!
Tuesday, September 9, 2014
A Transplant Journey... Always learning, growing, and fighting!
This week's clinic visit was a longer one because Sam was due for her two hour Pentamadine injection to help protect her against specific pneumonia strands. Tack on an hour on the front and back end and we were all tired getting home per usual. The good news is that Sam's platelets rebounded from last week. Her WBC though, not as much. They increased but ever SO slightly regardless of going down on her colitis medication. Her doc wants to try to start to taper her steroid again this week regardless and hope that her WBC hold or increase next week despite this. This will be another "wait and see" test of trial and error. If Sam can tolerate the resumed taper, we could be off steroids by the first or second week in October! It has been a long taper over several months and I'm trying not to get excited too soon because if her counts drop at all or she starts to show GVHD symptoms, we will need to increase again, but we've come this far, hopefully we can make it to the steroid taper finish line!
The other good news is they checked Sam's chimerism analysis as well this week. This is a test seeing how many of her cells are Kaeden's vs. her own. She is over 98% Kaeden:) The nurse said the lab at our hospital does not ever state above 98% to allow for a margin of error so this is as good as she can get! Sometimes over time this chimerism number can start to drop and below 90% can start to be worrisome, so we will most likely check this monthly from here on out and especially when we start to try to taper her anti-rejection drugs. We also checked her EBV which is the common virus that can turn to lymphoma in post-transplant patients that we were worried about a month or so ago. This is down a GREAT deal which is also good news (from 40,000 before to 4,300 today). Her CMV and adenovirus (two other scary post-transplant possibilities) were negative also. Her IGG (passive immunity) was low but not at a transfusion level yet. Hoping to make two more weeks before that four hour one! All great stuff!
The NOT so great news from this week (because there is always some), is that her cyclosporine level was a LOT lower than usual. This is the VERY important but horribly tasting and scary drug for anti-GVHD and rejection that almost all post transplant patients have to take. It has a LOT of side of effects and is hard to find a good therapeutic level. Besides Sam's awesome unibrow and tremendous dark hair growth, we have thus far avoided the majority of the most bothersome side effects and maintained a therapeutic level of around 150 - 190 (supposed to be 150 - 450). Today Sam was down to 54 from 99 the previous week. Unfortunately this has always been a concern b/c cyclosporine is extremely "sticky" and adheres to plastic so her dosage going through a G-tube through her stomach was something the docs weren't sure would work. It seems the "old" PEG tube was made of a different material and I told the nurse today I think the new tube extension tubing is causing this drop because the medication is sticking more. The RN didn't have a lot of suggestions as of yet, so I will do my "Mommy Research" with other moms, call pharmaceutical companies, our homecare nursing company, and anything else I can think of to see if we can get an extension tubing of different material, a shorter length, or a syringe small enough to fit in her tube portal directly without extension. If Sam starts to show GVHD symptoms or signs of graft rejection, we will advocate quickly to just put her under and have the old type of PEG tube placed again. Although it does extend and hang from her body 24/7, she had it before for months and we can do it again if it helps us over the next 6 months hump that she needs to be on the med.
We have spent the last eight months tirelessly attempting to become experts about this disease, treatment options, and transplant complications. I can honestly say that despite this effort, there are always questions that come up each week that cause us to search for new answers. Among the transplant community, it is common to hear one say "each person's journey is unique and different" and we have found this to be true of Sam as well. Despite the tremendous medical world's knowledge of "general" outcomes etc. so much of this is still educated "guesswork." There is no "typical course" followed by most. So this next week we'll continue to try to learn more, find possible solutions, and FIGHT this next mini-med battle.
This week's clinic visit was a longer one because Sam was due for her two hour Pentamadine injection to help protect her against specific pneumonia strands. Tack on an hour on the front and back end and we were all tired getting home per usual. The good news is that Sam's platelets rebounded from last week. Her WBC though, not as much. They increased but ever SO slightly regardless of going down on her colitis medication. Her doc wants to try to start to taper her steroid again this week regardless and hope that her WBC hold or increase next week despite this. This will be another "wait and see" test of trial and error. If Sam can tolerate the resumed taper, we could be off steroids by the first or second week in October! It has been a long taper over several months and I'm trying not to get excited too soon because if her counts drop at all or she starts to show GVHD symptoms, we will need to increase again, but we've come this far, hopefully we can make it to the steroid taper finish line!
The other good news is they checked Sam's chimerism analysis as well this week. This is a test seeing how many of her cells are Kaeden's vs. her own. She is over 98% Kaeden:) The nurse said the lab at our hospital does not ever state above 98% to allow for a margin of error so this is as good as she can get! Sometimes over time this chimerism number can start to drop and below 90% can start to be worrisome, so we will most likely check this monthly from here on out and especially when we start to try to taper her anti-rejection drugs. We also checked her EBV which is the common virus that can turn to lymphoma in post-transplant patients that we were worried about a month or so ago. This is down a GREAT deal which is also good news (from 40,000 before to 4,300 today). Her CMV and adenovirus (two other scary post-transplant possibilities) were negative also. Her IGG (passive immunity) was low but not at a transfusion level yet. Hoping to make two more weeks before that four hour one! All great stuff!
The NOT so great news from this week (because there is always some), is that her cyclosporine level was a LOT lower than usual. This is the VERY important but horribly tasting and scary drug for anti-GVHD and rejection that almost all post transplant patients have to take. It has a LOT of side of effects and is hard to find a good therapeutic level. Besides Sam's awesome unibrow and tremendous dark hair growth, we have thus far avoided the majority of the most bothersome side effects and maintained a therapeutic level of around 150 - 190 (supposed to be 150 - 450). Today Sam was down to 54 from 99 the previous week. Unfortunately this has always been a concern b/c cyclosporine is extremely "sticky" and adheres to plastic so her dosage going through a G-tube through her stomach was something the docs weren't sure would work. It seems the "old" PEG tube was made of a different material and I told the nurse today I think the new tube extension tubing is causing this drop because the medication is sticking more. The RN didn't have a lot of suggestions as of yet, so I will do my "Mommy Research" with other moms, call pharmaceutical companies, our homecare nursing company, and anything else I can think of to see if we can get an extension tubing of different material, a shorter length, or a syringe small enough to fit in her tube portal directly without extension. If Sam starts to show GVHD symptoms or signs of graft rejection, we will advocate quickly to just put her under and have the old type of PEG tube placed again. Although it does extend and hang from her body 24/7, she had it before for months and we can do it again if it helps us over the next 6 months hump that she needs to be on the med.
We have spent the last eight months tirelessly attempting to become experts about this disease, treatment options, and transplant complications. I can honestly say that despite this effort, there are always questions that come up each week that cause us to search for new answers. Among the transplant community, it is common to hear one say "each person's journey is unique and different" and we have found this to be true of Sam as well. Despite the tremendous medical world's knowledge of "general" outcomes etc. so much of this is still educated "guesswork." There is no "typical course" followed by most. So this next week we'll continue to try to learn more, find possible solutions, and FIGHT this next mini-med battle.
Wednesday, September 3, 2014
Birthdays, School Days, and the "New Normal"....
First, the not fun stuff... Last week's clinic visit started out GREAT. Sam was in good spirits and the doctors were talking about how overall she is doing so well. We were discussing removing her PICC line in about 8 weeks and hopefully getting her off of steroids in 4-8 weeks as well. Then when I got home the phone rang. Sam's counts came back and her white blood cells and platelets were down 50% of where they have been over the last few months. Not in a dangerously low level as they used to be but still not the trend we want to see. The docs are hopeful it is a reaction to the medication she is on for her colitis as this can interfere with the cyclosporine and be somewhat of a marrow suppressant. We will be lowering that medication significantly this week and next hoping her counts rise again. The other option is it is due to the steroid taper which is not great news as it is indicative of the steroid treating some unknown "autoimmune component" and would require us to stop the taper. My last personal hope although not the docs theory is that Sam's surgery for the replacement G tube "ate up" some of her platelets and white cells for recovery/healing. This happened right after transplant and we briefly saw a dip in her numbers so I'm not "just" basing my opinion on my self-appointed interned M.D. license:)
This past weekend was Sam's bday! She is two years old now and she knows it:) We had a quiet day at home with Brandon, Kaeden, and both of my parents. Sam opened gifts in the morning and we did cake in the evening. She had been specifically "asking for things" for her "birfday" for weeks and she was pleasantly surprised to find all the wrapped gifts in the basement after waking like x-mas morning. She felt special and we celebrated her all day! We took a long family walk along the lake and took some pictures in our "Sammy Strong" t-shirts! Even though it wasn't a "party" with lots of folks around, she felt loved and so it was a successful birthday for sure!
Kaeden also started Kindergarten this past week and so another transition in our house took place. He was excited and ready to go back to school! Sam loves riding in the car to take her big brother to school as it is one of her few "outings" but she must remain in the car with BaBa while I take him inside. She has gotten used to this routine as this is what we do to grocery shop, target runs., Kaeden's soccer lessons, playdates etc. She stays in the car or drives around while I go inside to quickly get what we need. Not ideal, but again it's our normal and not something we think too much about anymore.
Each night, I lay out the kids bedtime clothes and outfits for the next day. I paused the other night before Kaeden's first day as I looked at Sam's "night time gear." Some of it is normal toddler stuff: a diaper, rash cream, pjs etc. A lot of it though is not. Heparin syringes, sterile gloves, alcohol swabs, green caps, and an ACE wrap for her PICC central line. Myleplex transfer bandage for her G tube and still a long line-up of meds with her attachment stomach tube now as well. Every night this routine takes place and it is pretty much second nature at this point. Sam has gotten SO much better with all of this care and so have we. I remember the first weeks with her PICC line and G tube and how terrifying and overwhelming it all felt for all of us. Sam screamed when we had to do anything and we literally would shake and sweat for fear of doing something incorrectly that could lead to infection or worse. I feel deeply for the many families that I see join the support group "Band of Mothers Against Aplastic Anemia" on FB each week/month as they are filled with this same overwhelming sense of fear and anxiety as they begin their battles with this disease. While I still feel that fear and anxiety creep in almost daily, the routine of it all has truly become a "new normal."
As I looked at all the smiling babes and toddlers being carried in their mothers' arms into Kaeden's school on Tuesday, my heart sank a bit as I peered back at Sam through the car window. Her excited eyes looked back at me and then to all the kids walking into the building. It can be sad seeing everyday things that she misses out on, but I know how far we've come and if we keep heading in the right direction, there will be SO many opportunities for her to have these experiences in the future. This gift is not lost a bit on us especially with continued reminders of those lost within the Aplastic Anemia community over the last few weeks and months around the country. Very hopeful her counts rebound this next week and we continue in a relatively "calm" way with our "new normal" which gets easier and easier each day!
This past weekend was Sam's bday! She is two years old now and she knows it:) We had a quiet day at home with Brandon, Kaeden, and both of my parents. Sam opened gifts in the morning and we did cake in the evening. She had been specifically "asking for things" for her "birfday" for weeks and she was pleasantly surprised to find all the wrapped gifts in the basement after waking like x-mas morning. She felt special and we celebrated her all day! We took a long family walk along the lake and took some pictures in our "Sammy Strong" t-shirts! Even though it wasn't a "party" with lots of folks around, she felt loved and so it was a successful birthday for sure!
Kaeden also started Kindergarten this past week and so another transition in our house took place. He was excited and ready to go back to school! Sam loves riding in the car to take her big brother to school as it is one of her few "outings" but she must remain in the car with BaBa while I take him inside. She has gotten used to this routine as this is what we do to grocery shop, target runs., Kaeden's soccer lessons, playdates etc. She stays in the car or drives around while I go inside to quickly get what we need. Not ideal, but again it's our normal and not something we think too much about anymore.
Each night, I lay out the kids bedtime clothes and outfits for the next day. I paused the other night before Kaeden's first day as I looked at Sam's "night time gear." Some of it is normal toddler stuff: a diaper, rash cream, pjs etc. A lot of it though is not. Heparin syringes, sterile gloves, alcohol swabs, green caps, and an ACE wrap for her PICC central line. Myleplex transfer bandage for her G tube and still a long line-up of meds with her attachment stomach tube now as well. Every night this routine takes place and it is pretty much second nature at this point. Sam has gotten SO much better with all of this care and so have we. I remember the first weeks with her PICC line and G tube and how terrifying and overwhelming it all felt for all of us. Sam screamed when we had to do anything and we literally would shake and sweat for fear of doing something incorrectly that could lead to infection or worse. I feel deeply for the many families that I see join the support group "Band of Mothers Against Aplastic Anemia" on FB each week/month as they are filled with this same overwhelming sense of fear and anxiety as they begin their battles with this disease. While I still feel that fear and anxiety creep in almost daily, the routine of it all has truly become a "new normal."
As I looked at all the smiling babes and toddlers being carried in their mothers' arms into Kaeden's school on Tuesday, my heart sank a bit as I peered back at Sam through the car window. Her excited eyes looked back at me and then to all the kids walking into the building. It can be sad seeing everyday things that she misses out on, but I know how far we've come and if we keep heading in the right direction, there will be SO many opportunities for her to have these experiences in the future. This gift is not lost a bit on us especially with continued reminders of those lost within the Aplastic Anemia community over the last few weeks and months around the country. Very hopeful her counts rebound this next week and we continue in a relatively "calm" way with our "new normal" which gets easier and easier each day!
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