As you all know Anthony has a clotting disorder called hemophilia. Don’t be sucked into the myths though, each paper cut does not look like Texas Chainsaw Massacre, he just bleeds longer than your norm. I treat him like a normal little boy; he came with no bubble wrap for the random spurts of jumping off his bed to see if he can land on the dresser. >.< Recently he’s started thinking about what he wants to be when he grows up. For the most part these interests include becoming inanimate objects, such as; a train (a steamy not a diesel), a monster truck, a motor cycle..you get the picture. He also thinks he might enjoy being a firefighter. My response to this? Go for it! Would I prefer he were a doctor? Yes! But how could I ever tell someone they can’t follow their dreams ‘just because.’ Who am I to say he can’t be a firefighter? I figure this is all pretty simple, instead of stressing I’m just going to let him keep dreaming as long as he can and when he gets older either he’ll know his limits enough to stay away from something too dangerous for him or there will be a cure by then. And between now and then if he decides he’s going to play football in highschool I’ll go buy a foam finger and hope like any other mom he doesn’t break his arm.
I am entirely certain that we won’t be seeing our nurse again. Yesterday I sat around waiting to hear from her about what time she would be arriving to do Anthony’s infusion, when she didn’t show I could only assume she would be showing up at the same time as the previous week, 6:30am. Of course that wasn’t the case and at around 9:30 I got a phone call from her saying, “We changed your time to Thursday, didn’t anyone tell you?” WTH?! That’s not how home care works, we are supposed to agree on a time not they change it and don’t tell me. What would have happened if I had plans to, you know, not be home! on Thursday? Then again this is the same woman who wanted to sedate my son before his infusions with Benedryl so what’s done is done I suppose. Today we had infusions done in the clinic and while he wasn’t happy about being there his natural fight or flight instincts didn’t kick in to quite the magnitude that they have been. He cried, he kicked a little, he did not however wrench his arm from my grasp causing the needle to dislodge and blood to pool up on him. The emla cream did help to numb him and he really didn’t feel a thing. He was just upset, which to me is entirely understandable given his last 2 experiences with prophylaxis. Here’s to hoping my little trooper has a better week next week. I am so happy that we are figuring this all out together and that I have the wonderful Miss Leslie to help me through it all. By the by the big boy we all know and love had his first day of “school”!!! He adores it and cannot wait to go back. Don’t know when it was that my guy got so grown up but I guess it’s time I got used to it.
This week has been a rough one. Anthony had his second ever joint bleed. The first time was nearly 2 years ago and he bled into his ankle, no big deal 8 hour ER stay on Halloween and he was all fixed up. Sunday I picked him up from a cousin’s house and he was fine, playing, begging to stay. After the 2 hour drive however he was in tears and unable to move his arm completely. Forget about letting me touch it to measure or even check for bruising. After a lot of crying from him and some frustration from me I was able to get a look and see nothing. No bruises and it didn’t look swollen to me, but you can’t really tell these things without measuring. I spoke with a oncall hematologist about his arm and was told to ice it, give him acetaminophen and if he was still hurting in an hour and a half call back on my way to the ER. We were fine for the rest of the night after his pain reliever kicked in and I didn’t worry about it. The next morning however he was distraught again over his arm and unwilling to even bend it to get dressed. This time I spoke to a nurse on the phone, explained the situation and took measurements. Turned out that one elbow was a full inch and a half bigger than the other. definitely a joint bleed. And so began the phone calls. Do we take him to the doctor? Can we get a home health nurse to our house to infuse him? Do we need to go to the ER? From 9am until 3pm I waited while my health care professionals called each other, made arrangements and finally decided they couldn’t help me and that it was time to go to the ER. This was our 15th ER visit since Anthony was born for a factor infusion. I can’t believe that the numbers have gotten so high in just 3 years but there it is 15 infusions in the ER and probably more than that done in a clinic. Tuesday morning the phone calls began again. The measuring began again. The searching for a solution began again. ER? Home health nurse? Clinic? His elbows still had an inch and a half difference in size and he couldn’t bend his right arm and so he still needed factor again. At nearly 6pm on Tuesday night Anthony had his first infusion done in the home by a nurse. I haven’t seen him scream like that in a long time and I have certainly never earned that look of betrayal from him before. We came on to his home turf and violated his safe place with needles and medicine. He wanted nothing to do with me when we were done. I came to him, sat him on my lap, told him how proud I was to have such a strong and brave boy and he told me to “Leave me alone right now.” In those moments he looked a bit older. His seriousness, not the words he spoke, but the look of someone who is just tired of their lot in life was like a knife to the heart for me. And the nurse said to me, “Some homes I cry when I leave. This is not one. I won’t cry when I leave here today.” I cried though.
This morning we all loaded up and made the hour ride to our Hemophilia Treatment Center (HTC) to further discuss a plan of action for Anthony. Our doctor had clearly been back and forth with her superiors about our case because what we are requesting is not the ‘standard of care’. It is only with the knowledge we were able to show her that she completely agreed that our family is ready for prophylaxis before Anthony reaches the place in his life where a joint bleed is the norm. Here in Florida before a hemophiliac receives prophylaxis, which is basically treating hemophilia before a bleed occurs, they must be having joint bleeds somewhat regularly. Joint bleeds are exactly what they sound like, a bleed that occurs inside a joint causing the build up of scar tissue. You can imagine the incredible difficulty one would have maintaining mobility after something like that begins to happen. I decided a little while ago that any joint bleeding would later add to the normal issues that people with no disorders face and so I began the process of getting him put on prophylaxis before any issues. After 2 medical opinions and finally just switching HTCs altogether I found a doctor who is willing to hear me out and start him on prophylaxis once a week maybe more depending on blood work. We will be holding off on putting a port in his chest until we can be sure that A. He will be on prophylaxis for more than a couple of years or B. That his veins really can’t take the medicine and it isn’t just a lack of factor in his system causing them to blow. I am so happy that we are making these steps toward bettering his quality of life. Hopefully it will be a long time until we spend another holiday in the ER if ever again, though I must say Arnold Palmer gives our pretty good costumes on Halloween. =] It’s been a good week; first my birthday, now finding out that he is getting prophy and next week I’ll be celebrating my greatest accomplishment, Anthony’s birthday.
My mother has linked me to a hemophilia B support group on Facebook. It’s lovely to see all these women sharing their experiences and really guiding one another through the journey we have all found ourselves on.
I’ve been feeling my way alone up to this point but I am really enjoying the fact that I can ask questions and get real answers from real people who have been there. And because I have been actively communicating there my previous thoughts about hemophilia are being changed. I have always loved our clinic and the people there. I have been immensely happy with how we have been treated until recently. This no prophylaxis thing has been bothering me I’m not going to lie. I think he needs it before he has a target joint. Any bleeding that occurs in a joint damages it, ANY. Once that damage is done there is no
repairing it, that’s it, sorry about your bad luck hope it doesn’t give you too much trouble when you are older. I’d like to prevent Anthony having issues if at all possible. And it IS possible. However our very own Dr. J doesn’t feel as though treatment is warranted until he is already having issues. He says that historically prophylaxis is used to stop joint bleeds from worsening. I happen to know that the meaning of prophylaxis is preventative medicine. Seriously, look it up. That being said should a diabetic wait until he/she goes into shock to receive insulin? No. They get insulin every single day to prevent diabetic shock. This would be the only example of common prophylaxis I can think of at the moment but I feel as though my point is made. Severe hemophilia is what it is. We can’t change his DNA to include something that was left out generations ago. We can, however, add what he needs to make him somewhat safer. I am reading stories from these women about how their children are able to play not just any sports but contact sports. We were told that would never be possible. It saddens my heart that my HTC is not as progressive as others. It saddens me even more that because of their lack of modern thinking we will probably have to find somewhere new to go. Good people and doctors that we are comfortable with is important but what is more important is that Anthony receive the sort of health care he deserves. I am bothered mostly that I didn’t feel like I needed to look into the things they told me at clinic until now. Generally when I’m told anything health related I’m at home researching it, asking questions, looking at other medical point of views. When I walked into the office at clinic for the first time and they explained to me how there would be no sports allowed in his life I accepted that as law. That’s it. Pack it up now everyone, no bleachers for us cheering him on, don’t buy him a baseball glove or teach him to play football. Part of accepting the things that happen to you in life is knowing where you can test the limits. I don’t know that they will ever find a cure but I’ll be damned if I ever again think that he can’t do something because of hemophilia again. We are going to pay attention, do the research and try something new all the time. And if he happens to have a bleed at least I’ll know how to infuse him at home.
Our 6 month check up with the hemotologist was today and I am so pleased with the results! Anthony is doing amazing and based on his medical history he doesn’t even look like he has severe hemophilia (due to the lack of joint bleeds). Some days I worry that I am not doing the best possible for him and stress over my decisions and lack of knowledge but I truly have done well. When I was pregnant with Anthony I agonized over whether or not I would be a good enough mother for him, even unborn I knew he deserved the very best. The doctor said that he doesn’t need prophylaxis treatment yet and he is more than capable with coping at a preschool with other children his age. His joints are perfect and he is more flexible than the normal little boy all conditions set aside. I rest easier knowing that we can set aside the hard choices for another 6 months and he can remain carefree. In the meantime I have a lot of researching to do. I want to find someone who has a child with the same disorder as Anthony [a few families actually]. My goal is to pick apart their brains and learn about the choices they have made. The port is a huge decision for me and I want to be sure that it is the best alternative to treatment directly in his veins. I am however having trouble getting people to respond to me so if anyone knows of another family going through this encourage them to contact me. I also want to meet families in the central Florida area. Yes Anthony should have relationships with any sort of child but I feel like he would benefit from being a part of the hemophilia community and knowing a child his age that is/will be going through the same things he is. Someone he can relate to on a level that he wouldn’t be able to with another person. As always thanks to everyone for your continued support. Look us up on Facebook at Facebook.com/HemophiliaAndHim
We have been seeing the pediatric hemotologists at Arnold Palmer Hospital Hemotology/Oncology Clinic since Anthony was a week old. I love the staff there and wouldn’t even dream of going anywhere else for Anthony’s treatment. You can pretty much bet that as long as we live in Florida we will be going there. That being said our nurse practitioner of the past 3 years is leaving at the end of the month. I am as heart-broken over this as a person can be. Miss Virginia has held my hand and led me through this whole process since I was a scared 18-year-old with a newborn that had a genetic disorder to the woman I sit here as today who is more than capable of taking care of business. I will be so sad to see her go =[. On the bright side our other favorite nurses and doctors won’t be leaving with her and I have complete confidence that she will be replaced by someone equally as wonderful.
Our hospital trips are always an experience but today was I’d say the least traumatic one that Anthony has had to date. He held his little arm out as Miss Mimi put the IV in and held it there like a champ. Before it was more of a thrashing fit of small child fury including screaming, crying for help, my pleas to calm him down, and of course the ever pleasant rip the IV out with his teeth routine that Anthony was so fond of. This is sort of a bittersweet moment for me; I am thrilled that he is capable of getting his treatment without freaking out about it but no small boy should ever be so used to getting stuck with a needle that he can take it without tears or even a little bit of fear. I guess its to be expected but as a mom my whole world would be complete if he didn’t have to behave better than I do when presented with a needle.
We have even more news! Anthony’s next appointment has been moved up from October to August. They have decided it is time to talk about prophylaxis. Prophylaxis can be best described as ‘preventative medicine’. Rather than waiting until Anthony has a giant bruise or is bleeding waaay too much to give him factor twice a week wither a nurse will come to us or we will visit the hospital and he will receive his medicine. TWICE. A. WEEK. That’s right, two times in a 7 day period Anthony will have to get an IV to receive this factor. Now I know some of you are sitting there thinking well it’s not that bad or it could be worse. Please stop being a butt and ask yourself when the last time you had an IV was and for that matter when is the first time you remember having an IV? Because for Anthony it will be so normal he won’t know any different. He won’t remember a time when he didn’t see his doctors twice a week and until he’s older he’ll think it’s something everyone goes through. Now please remind yourselves that his isn’t even 3 years old yet. It is that bad or at least I think so. His veins will eventually collapse and he will have a port surgically placed in his chest and connected to main artery so he can continue to receive his medicine. And this will happen for the rest of his life. My heart bleeds for what he is going to go through and I hope that the rest of you are feeling it also. Spread the word. Donate. Save my little boy. Please. More pictures on facebook.com/hemophiliaAndhim