Thursday, November 11, 2010

Tears and Sunshine

I wonder how long it takes until you can talk about your child's illness without crying? I realized this week that there isn't a day that goes by where I don't shed a tear. It's like "break through" pain that escaped my vault. The vault of where I store my heartache for all that's happened this past year and the uncertainty of the future. As hard as I try, I can't stop images of Julian in a coma, completely swollen, looking like a different person laying there from creeping into my mind. Most of the time I'm spaced out from all of the holding back of the emotional dam.

Last week, myself as well as the rest of my kids had to go get tested for this mutated gene and for the function of the cells related to this gene (NK cells). I learned that there is a 50% chance that I passed it on and we already know that I have to have one copy of the gene for Julian to have gotten it. Most of the research articles published about the gene mutation that I have are people whom died of HLH and had one copy of the gene. Julian has two copies which places him at a higher risk. I suppose each day I will take a baby step closer to learning how to live with the "uncertainty" of life.

I have a goal to organize a bone marrow drive and have found out that there needs to be a fundraiser done first. This is to help cover the costs of having people tested and placed on the bone marrow registry. The cost is approximately $100 per person. The fundraising is what I'm having difficulty with. My ideas keep hitting a brick wall and I don't have the strength right now aggressively persue it. I'm still working away at it.

In the meantime I have I am finding great comfort in my beatiful 10 month baby and in seeing Julian thrive as a football quarterback and maintaining straight A's. He is amazing and doing so well. His recovery really is a miracle. God is so powerful!

Sunday, October 24, 2010

Blood Test Comes Back

Blood test confirmed that the FET was not a success. I'm glad that I already knew the results. I think it would be tough to build hope and let your mind play tricks on you just so that it crushes you at the end. I felt prepared. Although, POAS can play tricks on one's mind too.

No more IVF cycles for our family. I've hit that place where I have to accept that I have a beautiful baby boy and I'm blessed for that.

I am still struggling to cope with Julian's prognosis. He's strong and healthy and feels great but to know that he is high risk for relapsing is a bitter pill to swallow. I wonder if I will ever be able to think of how sick he got without crying. I can't even look a the cards or photos that he received while he was in the hospital without falling apart. I hope that this doesn't last forever. I hope that I have Julian around for my "forever".

Thursday, September 30, 2010

Negatives Negatives

I am 8dp5dt from FET and still had a BFN this morning and evening. I feel my heart getting heavier and heavier in my chest. The reality of this being my last shot is sinking in and the reality of it most likely being a failed cycle.

Today was a rough day with Julian. He forgot he had football practice and didn't show up yesterday. I had a long conversation with two of his coaches that are not happy with him. Julian is the quarterback of his team and has not been throwing as well, running as fast, or been as fearless as he was (which was never that fearless anyway) since he was sick. I realize that most of the coaches don't understand that Julian lives with the knowledge that he may get sick again and there is a level of uncertainty about his future. That's quite a load for a 12 year old to carry. Let's not forget the waking up from a coma, not being able to walk or feed yourself and realizing that you missed a month of your life. This was only a few months ago. It's amazing that he is playing at all.

So, part of me gets angry that he just isn't trying that hard and he isn't focused and the other part of me feels angry with the coaches for not understanding. Then there's the part of me that feels bad for the coaches because they want to play Julian but he isn't making it easy.

Julian was a star quarterback that is a talented player, as I am told. So, their expectations are high. Maybe it was too soon for him. Maybe it was too soon for this FET. Why does everything feel like such a conflict for me. The only time that I don't feel conflicted is when I have the baby in my arms. Then, I just feel happy and thankful. I wonder if I will ever be able to look at Julian and not have this intense fear of "what if he gets sick again?" in my chest. Will I ever look at him and not feel the pain of almost losing him?

I am not sure that I can handle a negative beta. It's lost cord blood, last chance, lost embryo/baby. My beta is next Wednesday and my mind will be going nuts until then.

Monday, September 27, 2010

Julian's website

You can look at Julian's website for more information:
search for the profile "4juliankinard"

So Many Changes

It has been a long time since I have written. I am happy to say that I had a beautiful little baby boy on December 30th. He was born at 35 weeks gestation and is happy and healthy and has brought me so much joy.

I was a crazy time. I had just been diagnosed with pregnancy induced hypertension and placed on bedrest the week before Christmas. During that same week, my 12 year old developed a fever. This also happen to be the "swineflu" season and it was everywhere. I assumed that he had the flu. However, as the days past he developed no other symptoms aside from fatigue and no appetite. He never had a sore throat, vomiting, diarrhea or anything else. After almost a week, he suddently became very yellow (jaundiced) and therefore we immediately took him to the hospital. We discovered that he was in liver failuer and were transferred to Children's Hospital in DC.

Needless to say that the stress and lack of bed rest was not helping my pregnancy but there was nothing in the world that was going to keep me from being near my 12 year old. Several doctors saw him and could only say that they suspected some type of virus caused him to have hepatitis. He tested negative for everything (EBV, CMV, HIV, Hep B and C, Strep, Flu).

After a few hours of being there, I thought that my water had broken. I was moving stuff around in his room when I felt that gush. I was shocked to find that it was blood and not clear fluid. Fortunately my cousins had just arrived to see Julian (my son) and therefore my husband was able to rush me to the hospital. I was evalated and diagnosed with a cervial polyp or tear and discharged. When I returned to my son's hospital, he was on life support. It was devastating. There were still no answers and he was on the maximum doses for medications to support his blood pressures, he heart rhythms were abnormal, his fevers about 105, his platelet counts (which is the component of the blood that allows the body to clot and not bleed out) was down to 3 when normal is 150-400. He was bleeding in to his eyes, lungs, brain. He was unresponsive. I felt like my life was falling apart and couldn't imagine how I was going to deliver a baby or be a mother to a newborn when my 12 year old desperately needed me and worst yet, what if he didn't make it.

My son's nurses felt very concerned and strongly encouraged me to be seen by my OB (whom was not the person that evaluated me at the hospital). I agreed and went the next morning and was told that the baby would be delivered right away because my doctor felt that I had a slow tear in my placenta and my blood pressure was out of control. I literally fell to the floor crying because I didn't want to stay away from Julian for that long but had no choice.

My doctor was awesome, he spent most of my labor pacing around in my room. He did everything that he could to ensure that I would have a vaginal delivery knowing that I would be leaving the hospital as soon as I possibly could and he was right. Carson was born shortly after 7p and was taken to the NICU for some help with his breathing. After a few hours I left and returned to Julian's side. Carson was in a Maryland hospital and Julian was in DC.

Carson came home in about a week and Julian was seen by a new doctor the CNMC that had come from Cincinnati Children's Hospital. He recognized the rare illness that was attacking Julian's body and began treatment. He was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH). Julian had received several blood transfusions, had swelling in his brain but was continuing the fight for his life. He finally began to turn the corner in the first few days of January. New Year's Eve was his worst night where we thought that we would lose him.

After several weeks in the hospital and going through rehab to learn to walk again and gain his strength, he finally came home. He is now back to being the quarterback of his football team and thriving. We are so blessed!!!! I learned the value of life in a way that most never will.

Unfortunately the only cure to HLH is a bone marrow transplant which at this point would only be done if Julian were to relapse. He is in remission with a risk of relapse. However, the doctors have told us that no one can say if and when he will ever get sick again and it is this reason that we won't do a BMT unless he relapses. That brought us to deciding to use the 2 frozen embryos we have. We want to store the cord blood which was not saved with Carson.

We had the embryos thawed last week, one surivived and was trasnferred on Septermber 22. I am not sure what to feel about everything. I am still not recovered from all that happened. Today is 5dp5dt and I had a negative. I know that it's early and I hear that with FET's, you get an even later results. So, pray for God's will and that I can handle whatever that might be.