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Friday, February 4, 2011

Infusion #2

During our wonderful dinner with the hematologist (see previous post) my mom stayed home with the littles (hey, I was going to take full advantage of the free wine and dinner at Ruth's Chris). Thanks mimi! She mentioned to me that I needed to put away Camdyn's little chair because she caught her just before she tried to stand up in it. I heard her and intended on doing it the next morning when she was awake.

Saturday morning we were all getting ready for Caden's basketball game when we heard a thud and then a cry. Sure enough she had pulled out that dang chair and I assume (did not see it happen) she stood up and fell forward. She hit her forehead on the door jam. It did not look good. No blood just a big goose egg. I called the hemo on call and was on hold for a couple minutes before I just decided to take her in.

We had previously been instructed to go only to Santa Rosa's ER. They took her in quickly. The ER doctor did not seem concerned about the bump and was confident there was not internal bleeding but called hematology to be extra careful. It was decided to give her an infusion to just be on the safe side. As much as I hated this for her it out weighs the alternative of an internal head bleed.

The infusion was much faster and less traumatic than the first. Excellent nurse got a vein on the first poke. She never showed any symptoms or problems. It was nice knowing she was at normal levels for the next 18 hours too. She was left with a nasty bruise on her forehead but thankfully that is all.

I wish, wish, wish I could keep her bruise free (especially her little face.)

Meeting with an expert

We were invited to a dinner with a leading expert in the field of rare bleeding disorders last week. It was a very nice evening at Ruth's Chris Steakhouse. We were treated to a wonderful, yummy meal and truly appreciated the opportunity to met with Dr. Mathew's from NM. No surprise, we were the only VWD-III family there. I met two severe hemophiliacs, one seven one 23. It is the most comparable bleeding disorder to VWD-III we are told. I had such a peace talking to these brave boys. Both agreed that neither feel different than their friends and feel they are totally normal. Both play sports (no football) and do everything that they want to. One is on Prophylaxis- his mom infuses him every Sunday and Wednesday. No port- just the butterfly IV. They first apply numbing creme and he does not even feel the poke any more. He is the seven year old...he promised me it did not hurt :)

I saw my first port in a 2 year old with mild hemophilia. Neither of the severe cases had it but the mild did??? Goes to show the type does not exactly predict problems. That baby resulted with a brain bleed after birth (again thank you Jesus for my c-section that unknowingly protected my baby). For the first time I was with people that got fears, my concerns, etc... They were all there once. The parents all graciously shared their experiences with us. They assured us that it gets easier and less scarier and just becomes "normal."

Michael and I were both granted some time with the doctor. He felt that her case actually sounded more like a muscular Type I. Since the only problems we have seen are after shots (muscular). He offered a better way to administer her shots that we will try this month (ugh...shot time already). He gave us all the hope in the world with her case. It was a very nice evening....meeting new friends, having a nice dinner and feeling very encouraged.

Monday, January 17, 2011

For infusion of Humate-P

In November we went into Santa Rosa for her 3 month check-up and for her next round of immunizations. As always, I took her Humate-P. Every precaution was taken to prevent a bleed but after all of that when the bandages were removed all 4 shot sites were still bleeding. It was decided that she would be given Humate-P. We used the one I brought since it was readily available.

I cried and cried. The administration was much faster and smoother than I thought it would be. 5 seconds top. And within 15 minutes, she was not bleeding anymore. The last time she got shots (the shots that lead us on this journey) she bled for 18 hours. As disappointed that I was that she could not clot on her own and maybe all this VWD talk was nonsense, seeing the ease and proficiency of Humate-P gives me a piece of mind. She has a bleed that won't stop, we give her Humate-P and everything is ok. I'll take that.

First major accident


A week after her first birthday, we were on the back porch and she fell on the tile. She fell very hard. When I picked her up I expected to see alot of blood. She did not bleed at all but she did end up with a black eye. She was checked out by her hematologist and no intervention was needed. She had a black eye for a month, but to the hematologist's surprise, it never spread over to the other eye. However, months later I can still see the faint lines of her black eye. We were all amazed at how well she dealt with this hard fall. A type III should have had more problems. Go Camy girl!
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What does the diagnosis mean for Camdyn?

What we know:

* we have an amazing team that is taking excellent care of her.
* we have access to Humate-P, have it at home, daycare, my parents and carry it with us when we travel, etc...
* we have given it to her once and it works and she does not have reactions to it.
* Other than bruising easily and having trouble clotting after shots, she has not had any problems.
* She sees her bleeding team every three months for check-ups.
* All immunizations (shots) are given at Santa Rosa, with her team and many precautions are taken.
* We will continue to advocate her care and seek any and all that we can in terms of advances, etc...
* For now, we only will give her Humate-P if she has a bleed that requires it. If she starts having bleeding issues in joints, etc... we will give it to her prophylactically.
* HEB is so amazingly ordering her Humate-P for us for less than $5 a dose. It costs thousands for one dose without insurance.
* She can have babies one day if she wants.
* She can do any activities that she wants, except contact sports...don't want her playing those anyways :)
* Advances are there to one day replace her missing gene and make this go away. One day that I believe will be in her lifetime!
* She has no idea that she has this and I am thankful that by the time she is old enough to understand it will already just be a way of life for her.
* I am glad that she is unable to understand our sadness and grief the last 6 months. We are finally accepting it and she will only remember it as such.
* We don't think about VWD everyday. We are trained, educated and prepared. Let's not dwell on the unknowns or what-ifs.
* She inherited it from both Michael and I. We had no family history of it beforehand.
* Caden might carry the gene (TBD) but does not have the symptoms.
* She has a social worker through Santa Rosa that will handle educating her schools, caregivers, etc... Camy will have more bruises than the average child. 30% of VW patients' parents are turned into CPS. For this reason, Megan will go in and talk to others about Camy's condition as well as train them in what to do if she has a bleed.
* I have attended a bleeding conference, met another TYPE III mother and in a mini support group with other moms.
* I got burned by the other Type III mom- she is also a drug rep for a company who sells Humate-P and I think she just befriended me to sell me Humate-P.
* I belong to the Hemophilia and Bleeding Disorder chapter of Texas. Through this organization, I will raise money and proudly walk/run for my daughter.
* She walks and falls and bumps into things and is just fine. It does not slow her done in the slightest.
* Michael and I vow to allow her to lead a normal life. We don't want to put her in a glass house and deprive her of experiences and activities.
* If she has a bleed we know First Aid to treat it...if that does not work, we grab the Humate-P and go to Santa Rosa.
* She does not bleed more or faster than someone else. She just does not clot. She also has no problem replacing the blood that she looses so far.
* I can smell her blood from a mile away. From the moment I first smelled her blood in the hospital after her PKU test, I can identify her blood immediately. It is a very strong smell to me that smells of iron. I have no doubt that it is by no accident I have this strong reaction to her smell. It has no smell to everyone else.
* Ironically, I have a strong aversion to seeing blood. I faint. I have worked very hard to overcome this for my baby.
* Michael and I will be trained to administer her Humate-P when she gets older. It is given through a small IV.
* Once she is given Humate-P, her blood is completely normal for the next 12-18 hours. It clears up her bruises too!
* Humate-P is a human blood product, not a manufactured med. There has never been a case of blood contamination from Humate-P and it has been on the market for almost 40 years.
* There is another Type III girl treated at Santa Rosa. She is in her second year of college. She occasionally takes Humate-P but has never had a major problem or set-back.

Meeting our team at Santa Rosa

You have to remember our first experience with a hematologist and the trauma that we had been through up to this point. We reluctantly entered the hospital. I still have problems with the hematology floor being the same as the cancer. We met Trisha, Megan and Dezarae....Camdyn's amazing team. From the start it was a completely different experience. They were warm, caring and informative. I cried the whole appointment and they did not judge me for it. They did want to run their own tests. They informed us that only two labs in the US run VWD tests and it will take 1 month to get the results. They checked out Camdyn and thought she looked great. And set an appointment to see us in one month.

We were given literature to read, invited to attend a conference and given their cell phone numbers to call. Camy's blood was drawn, tests sent off and we went home. The next month was life as normal as it could be (as we prayed and cried) waiting for next month.

At our next appointment, we were told the tests were inconclusive. The results showed less than 10% VW factor but the lab noted that her blood clotted. They had never seen that before. Our team decided to proceed with her as Type III but we would test later on when she gets older. They will also be doing genetic testing on Caden, Michael and I later on.

Points of note for those who want to know more of the medical details:

* When she was in the hospital, she was given DDAVP and she did not clot- more justification for TYPE III.
* VW is one of the 12 factors found in every one's blood that helps us to clot. Someone with VWD does not clot normally. Type 1- decreased levels of VW but will eventually clot. Very common. Estimated that 1 in 4 people have it. Signs are heavy or long menstrual cycles, bruises easy, gums bled when brushing teeth, etc... Type II- normal levels but does not bind right to form clot. Two subtypes of Type II also exists. Type III- rare and the severest. one in one million. Must receive a recessive gene from both parents. Causes less than 10% VW factor in the blood. Patients will not clot. Must be given an infusion of VW factor (Humate-P). Can live a very normal life if condition is identified and has access to Humate P. Patients can experience internal bleeds or joint bleeds and can cause life-threatening conditions or permanent damage if not treated.