Sam had a long clinic visit this past Monday with mostly great news. She received her IVIG transfusion which gives her passive immunity. This line of defense is made by your "t cell" line. While Sam's overall WBC has been holding steady on the lower end of "ok" over the last month, her t-cell and b-cell line are taking longer to recover which is not uncommon. The docs think she should be able to go 6 weeks before her next IVIG transfusion and because her counts have been steady, we decided to try to switch her anti-pneumonia medication from pentamadine (once per month transfusion) to a twice weekly g-tube medication. This medication can lower platelets and WBC though so we will have to monitor after a month of being on the medication and make sure her counts stay in a safe range. Her doc has put her on an effective but "conservative dose" and is hopeful she will not have any harsh side effects or drops in counts with this switch.
This translates in "real life" for us being able to go one month until our next clinic visit which is a HUGE breakthrough for us! Because of this and after a lot of discussion and going "back and forth" we decided to "pull" Sam's PICC line this past Monday. So besides her G-Tube she is now "unhooked!". We were very apprehensive about this decision for a variety of reasons. On a practical one, now Sam will have to be "poked" at least once at every clinic visit and keep a line in her arm when receiving IVIG which will be taped down and not as "secure" as her PICC line, so transfusion and lab days will be a lot more difficult. She has gotten to the point where she honestly has enjoyed seeing her favorite docs and nurses at clinic and there has been little "pain and fear" involved besides her dressing change. The dressing change has just recently gotten slightly better as we switched to a different brand so it was a hard call as to whether the "poke" once every 2 weeks or so OR weekly dressing change would be worse given her improvement in the area. The other somewhat "irrational" fear is what if she regresses/gets a virus/ we end up in inpatient and she needs to be treated for a "bump in the road?" We will then have to place a new PICC line and removing this one almost makes us feel like we may be "jinxing" the steadiness of the last month or so. Again, this is not based on any logical medical thought process, just "mommy worry" so the rational side won out obviously! Sam's skin is very raw and sore where the dressing/line has been for over six months. She has another pressure dressing on it for 24 hours and then after 48 hours, if it has scabbed over, we can leave it uncovered. It took her about a week or so when her PICC line on her other arm was removed to feel more comfortable with her arm exposed and for the skin to not cause any discomfort so I think this time will be similar. This allows Sam to have a little more freedom in the bath (although her G-tube can not be completely submerged but can get wet), and allow us to get rid of weekly home care nurse visits for dressing changes, daily cleaning/heparain flushes before bed, bi-weekly cap changes, and the responsibility for Brandon and I to coordinate and ensure we order and maintain the exact supplies needed/ organize them and keep up with all the care. It also decreases a slight risk of infection and clotting for Sam (although again these risks were very small.) I know this sounds like a "no brainer" in many ways, but given all that Sam's been through, limiting any PAIN or FEAR from her routine care is something we really take as seriously as the medical side.
All in all, I do think it was the right decision, but it was a weird feeling putting her to bed without having to care for her "magic arm" for the first time in almost a year. One would think it would just be joy, but it is a strange mix of emotions because it was also a great tool that helped her receive needed medications to get us to this point without pain. In a way it's been a "security blanket" knowing it was there if we needed it. She will need to be put under anesthesia in mid-december again for her g-tube replacement and won't have her PICC line to give her meds to help calm her before separation or to provide fluids after the procedure as we are accustomed. If her counts drop on Bactrim and we have to go back to Pentamadine, that will equate to bi-weekly transfusions that are two and four hours in length without her "pain free" magic arm. I am hopeful that this scenario won't transpire but I know at the first few clinic visits without her "magic arm" I will question this no matter what. As I hold her and she screams/cries as they draw labs and IV insertion for transfusions I will momentarily curse myself and think that the home care/flushes/ small risk of infection is fine if I can avoid any more instances of pain for our sweet girl. But like all things she has encountered, I am confident and hopeful that this moment of doubt will pass and we will start to feel more confident that we are truly on a slow, but finally steady path to full recovery!
After a busy clinic day, we also will have a busy weekend ahead. There is of course Halloween on Friday and then Kaeden's b-day is the next day. All of these are great/fun things but require us to do some risk analysis! Should we let Sam trick or treat up and down one city block? Should she wear a mask? Should we only go early before it is crowded? Should I hold her on the sidewalk while Kaeden gets the candy? Will she protest and want to go to the door just like him (most likely)? Do the benefits of taking part in this joyous "normal child" occasion at all outweigh the small risks (if we take precautions) of encountering some "bad germs"? And what about Kaeden's b-day party? Do we let her attend his party knowing she will have a blast? But this is indoors and with a large group of kids and so this increases the risks even more than an early trick or treating outdoors? If she doesn't come to the party how do we coordinate set-up and Kaeden not feeling "second" because Mom, Dad, or Baba will have to be with Sam and miss the party? In the end, we have agreed to "split the difference." We will go trick or treating but I will hold her and touch the candy and place it in her bag. I will wipe down all the candy she and Kaeden have in their bags with alcohol wipes before they touch them and Sam will not hand out candy at the door. She will also not attend Kaeden's b-day party this year and we will rotate Baba and Dad on Sam vs. party duties. It'll be OK!
Every day, "normal activities" and annual events definitely do require an extra layer of planning and coordination given Sam's restrictions. At times this can make us feel resentful watching a family eat out at a restaurant together, attending b-day parties with siblings, Halloween parades, school activities together, neighborhood events without a second thought. Luckily these thoughts and feelings quickly pass though and are replaced with feelings of relief and gratitude as we know there have been so many times over the last year we were hoping and praying to even be in this position to have to make these decisions. We do know how lucky we are to even be thinking about future b-days and hopefully there will be many parties ahead for sweet Sam!
Wednesday, October 29, 2014
Wednesday, October 22, 2014
Another Milestone...
On October 10th, Sam reached the 6 month post transplant marker! Although these dates are somewhat arbitrary based on overall statistics and averages, it still helps to have these concrete goals and milestones to focus on during a long road of recovery. This one had a special significance as well based on a distinct memory. After Sam's diagnosis and learning Kaeden was a perfect match, we had over a month of "waiting and worrying" while Sam quickly deteriorated. During this time, we started exploring second opinions at Milwaukee WI and Cincinnati. We were "stuck" waiting for a panel of genetic tests that Sam's blood "failed" several times simply because her body did not have enough cells due to the severity of her disease. These are very expensive and rare tests, where the blood samples are sent to a lab in Canada each time and it took weeks to receive each "failed" result. Her blood was also sent to a specialty lab in Boston MA for a clinical trial, but failed to yield results there as well. We moved onto the skin biopsy for results but knew these would take 2-4 weeks also.
During this two week time frame, Brandon drove to Milwaukee and met with the most well-respected transplant doc for Aplastic Anemia in the country. We had already been in contact with him for several weeks via phone/e-mail and he was familiar with Sam's case, but we needed to go in person for a "formal second opinion" and to make a final decision as to where we would receive her transplant. This doc is a "character" but in a good way. He and I developed a good rapport from the start. He gave me his cell phone number without hesitation and often answered and texted on the weekends etc. He was invested, driven, obsessed even with treating aplastic anemia. He was confident, honest, and straightforward.
As Brandon drove in the snow and traffic to Milwaukee, I stayed back with Sam because she was not well enough to make the trip. At the time, she was receiving three platelet transfusions per week, red blood once per week, and had stopped walking, talking, and eating. She would have fevers and was hospitalized at least one to two times per week to receive IV antibiotics. I spoke with the doc over the phone as Brandon made his way inching down 94. There was A LOT said during this conversation but I remember one statement above all else. When asked about outcome probabilities for Sam, he stated without hesitation, "IF we can get her to transplant without acquiring an infection and through the six months post, her outlook is pretty darn good!" He was honest. He was confident. He was a straight shooter. Upbeat even, but no one had laid it out that clearly to us before. I was appreciative but all I heard was the "IF." I remember it feeling like such an out of body experience. It was as if time stopped and the floor dropped out from under me. As I looked down at Sam on my lap and stared out the window watching snowflakes fall to the ground, the fear grabbed hold. "IF..... IF...... IF....." I kept saying out loud as I got off the phone. He was an expert, he has performed more AA transplants than anyone else, and he said IF! The reality of the situation hit me and it hit me hard. In the end, we obviously decided to stay in Chicago, but this docs recommendations and collaboration with our Chicago team helped push things along in a more urgent manner and we were very appreciative of this.
So despite a huge change in her overall status, the six month marker was not lost on us at all. No restrictions have been lifted, her WBC count remains lower than it should, she is still receiving IVIG transfusions to boost immunity, is still taking a slew of intense medications, but overall she is doing "pretty darn good!" There may be some obstacles and hurdles ahead we know, but we REALLY hope that this expert was right and the MOST difficult days are behind us! We will return to clinic Friday and depending on her numbers, possibly again Monday for an IVIG transfusion, but we may be able to switch her from an IV pentamadine (anti-pneumonia) to a twice weekly medication through her G-Tube. This medication can sometimes cause a dip in white blood cell count though, so this will only be possible if her numbers "hold" from the last month and don't take another "dip." Either way, Sam made it to six months! Halfway to one year. Another milestone. Another marker off the list. Another memory of heartache and fear to start to "let go." Everyday, I hope we get further and further away from that "IF" until it's such a blurry memory, that it feels like another lifetime!
We wanted to also say a heartfelt thank you to family and friends who donated or joined the Be the Match registry in September. During that month, the Villanova football coach matched donations up to 200,000 and that mark was met! We have received several letters in the mail informing us of people who donated in Sam's honor and we are truly thankful. I can't imagine how scary receiving a bone marrow transplant was 10 years ago and I hope that 10 years from now research and medical advances will allow for even more lives to be saved. Thanks again from the bottom of our hearts for EVERYTHING and ALL of the support over the last year. Go Sammystrong Go!
On October 10th, Sam reached the 6 month post transplant marker! Although these dates are somewhat arbitrary based on overall statistics and averages, it still helps to have these concrete goals and milestones to focus on during a long road of recovery. This one had a special significance as well based on a distinct memory. After Sam's diagnosis and learning Kaeden was a perfect match, we had over a month of "waiting and worrying" while Sam quickly deteriorated. During this time, we started exploring second opinions at Milwaukee WI and Cincinnati. We were "stuck" waiting for a panel of genetic tests that Sam's blood "failed" several times simply because her body did not have enough cells due to the severity of her disease. These are very expensive and rare tests, where the blood samples are sent to a lab in Canada each time and it took weeks to receive each "failed" result. Her blood was also sent to a specialty lab in Boston MA for a clinical trial, but failed to yield results there as well. We moved onto the skin biopsy for results but knew these would take 2-4 weeks also.
During this two week time frame, Brandon drove to Milwaukee and met with the most well-respected transplant doc for Aplastic Anemia in the country. We had already been in contact with him for several weeks via phone/e-mail and he was familiar with Sam's case, but we needed to go in person for a "formal second opinion" and to make a final decision as to where we would receive her transplant. This doc is a "character" but in a good way. He and I developed a good rapport from the start. He gave me his cell phone number without hesitation and often answered and texted on the weekends etc. He was invested, driven, obsessed even with treating aplastic anemia. He was confident, honest, and straightforward.
As Brandon drove in the snow and traffic to Milwaukee, I stayed back with Sam because she was not well enough to make the trip. At the time, she was receiving three platelet transfusions per week, red blood once per week, and had stopped walking, talking, and eating. She would have fevers and was hospitalized at least one to two times per week to receive IV antibiotics. I spoke with the doc over the phone as Brandon made his way inching down 94. There was A LOT said during this conversation but I remember one statement above all else. When asked about outcome probabilities for Sam, he stated without hesitation, "IF we can get her to transplant without acquiring an infection and through the six months post, her outlook is pretty darn good!" He was honest. He was confident. He was a straight shooter. Upbeat even, but no one had laid it out that clearly to us before. I was appreciative but all I heard was the "IF." I remember it feeling like such an out of body experience. It was as if time stopped and the floor dropped out from under me. As I looked down at Sam on my lap and stared out the window watching snowflakes fall to the ground, the fear grabbed hold. "IF..... IF...... IF....." I kept saying out loud as I got off the phone. He was an expert, he has performed more AA transplants than anyone else, and he said IF! The reality of the situation hit me and it hit me hard. In the end, we obviously decided to stay in Chicago, but this docs recommendations and collaboration with our Chicago team helped push things along in a more urgent manner and we were very appreciative of this.
So despite a huge change in her overall status, the six month marker was not lost on us at all. No restrictions have been lifted, her WBC count remains lower than it should, she is still receiving IVIG transfusions to boost immunity, is still taking a slew of intense medications, but overall she is doing "pretty darn good!" There may be some obstacles and hurdles ahead we know, but we REALLY hope that this expert was right and the MOST difficult days are behind us! We will return to clinic Friday and depending on her numbers, possibly again Monday for an IVIG transfusion, but we may be able to switch her from an IV pentamadine (anti-pneumonia) to a twice weekly medication through her G-Tube. This medication can sometimes cause a dip in white blood cell count though, so this will only be possible if her numbers "hold" from the last month and don't take another "dip." Either way, Sam made it to six months! Halfway to one year. Another milestone. Another marker off the list. Another memory of heartache and fear to start to "let go." Everyday, I hope we get further and further away from that "IF" until it's such a blurry memory, that it feels like another lifetime!
We wanted to also say a heartfelt thank you to family and friends who donated or joined the Be the Match registry in September. During that month, the Villanova football coach matched donations up to 200,000 and that mark was met! We have received several letters in the mail informing us of people who donated in Sam's honor and we are truly thankful. I can't imagine how scary receiving a bone marrow transplant was 10 years ago and I hope that 10 years from now research and medical advances will allow for even more lives to be saved. Thanks again from the bottom of our hearts for EVERYTHING and ALL of the support over the last year. Go Sammystrong Go!
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