The Notebook...

Spring cleaning is still in full effect, leaving little time for much else. I haven't posted much on my twins group the last couple of days so it feels a bit strange, like that nagging feeling that something isn't quite right...but I digress....
Last night, while helping Drew clean out his room with our good friends Sharon and Jeni, we came across an old notebook. It looked vaugely familiar. When I opend it, I discovered that it was the journal I'd kept when Brandon was first diagnosed with Aplastic Anemia. I had started it to keep up with dates and illnesses and most of all medications because when you have a child with a serious illness, those relatively mundane details can quicky become a jumbled mess in your memory. But last night it served another purpose. We've long ago reached the point when its no longer necessary to keep all his details in a journal. He no longer has anything going on that needs to be recorded in such depth. Usually, even with the nastiest of virus'- he'll only need a few days of IV Rocephin. We know he'll be feeling better soon...gone are the days when the unthinkable crept into our minds and hearts while we waited for a repsonse to heavy duty antibiotics, knowing that cultures had come back positive, and that he had no white cells to help him out. So much has changed in those four years. So much to be thankful for. I'd forgotten just how much until I took that trip down memory lane again. Here are a few of the excerpts from the notebook I found.

APRIL 10th- Admitted to St. John's Medical Center. Platelet count of 7,000. White cell count of 2. Needs blood transfusion. Needs platelet transfusion. What is happening?

APRIL 11th- Bone marrow biopsy done. Leukemia probably ruled out. Suspected diagnosis of Aplastic Anemia. What the heck is that? We stand outside the hospital, in the parking lot while switching off shifts. I comment on the fact that three of our babies have been born there. That it was always such an exciting, happy place for us. We saw three new lives into the world there. We pray together that we don't lose one there. Now the hospital seems different, changed. There are new realities there I haven't considered before.

APRIL 13th 7:00 pm discharged from hospital with neutopenic precautions. No fruit, vegetables, fresh flowers, dirt. Few visitors, no church, no malls, resteraunts, shops, stores. Outside places preferable. Dilligent handwashing.

APRIL 13TH 11:00 pm. Re-admitted to St. John's. Chest X-Ray shows Pnemonia. Great. Medicines started- Acyclovir, Difflucan, Zofran, Neupogen, Morphine along with the general Tylenol we've always been used to. I've never heard of most of these...
Surgery today to insert Broviac line in his chest.

APRIL 14th- Rest of family tested for HLA tissue typing. Dr. Rob is looking for cord blood units donated from Brice's birth.

APRIL 24th- Neupogen discontinued. Not working. Albert and I have HUGE fight in hospital lobby. In front of everyone. About smoking, but really about fear, lack of sleep, constant worry and more fear. Later Albert calls to tell me no one matches Brandon's HLA type. Fight immediately over. We both cry. Only three treatment options exist for this disease. One has just been taken off the table. Strike one. Plans for bone marrow transplant are changed to plans for immunosupression therapy. Too risky to use unrelated matched donor unless immunosupression won't work. We need to try this first.

APRIL 26th- Discharged home. Home health to provide treatment at home

APRIL 28th- Checked into PICU for second bone marrow biopsy. Platelet count 24,000. Transfusion given. Discharged home a few hours later.

MAY 2nd- clinic appointment. Platelets up to 66,000 (yea) . Called Dr. Rob that night ffor fever 100 degrees.

MAY 4TH- dr. Bob admitts Brandon for fever. 101.
MAY 5th- Fevers continue. 103.8. Started on Vancomyicin, fluconozole, fortaz, and then just benedryl. On a positive note, got permission from insurance to do immunosupression treatment as outpatient.
Learned Drew has FAs Gene. Possible Brandon may have it too?
MAY 6th- blood transfusion. Directed donation from Albert. Learned later that this was a huge no-no. We didn't know...
MAY 7TH-stopped Fortaz. Waiting to see what happenes with fevers. Maybe we can go home tomorrow???
MAY 8TH- got platelets transfusion. discharged home. yay!

MAY 10th- Started Atgamm at clinic. This is the chemo portion of the immunosupression therapy. Ran 102.8 temp. Unable to use bathroom. Also started Predinsone and Cyclosporine. He'll need these for a while as part of the immunopsupression therapy. Also on oral Difflucan at home- I think to treat any fungal infections??? Or maybe for yeast? I don't know anymore...

MAY 11th- Cried all day and night because of pain. Inability to use bathroom. IV morphine started.
MAY 13th- Last day of Atgamm at clinic! Yes! Needed platelet transfusion. Still on prednisone and cyclosporine longer-term...praying this works.
MAY 27th- fever at clinic. Ceftraz (sp?) started. Home health will bring more to the house. Also ordered saline and dressing changes...

MAY 28th- blood cultures positive. Back to clinic to check counts.
MAY 29th- 103.5 fever and chills. Blood work was positive for Grahm neg. bacteria. WTH?

JUNE 2- Positive cultures for three aditional bacteria's. Decision made to remove the broviac line and replace with something else. Scheduled for tomorrow.

JUNE 4th- Home. Broviac tube removed. Replaced with PICC line. Later that night, PICC line blew while flushin with saline. Home health came by. Removed PICC line and put in regular IV.

JUNE 5th- took Brandon to bone marrow drive. Probably shouldn't have had him out but felt it was important. Dr. Rob called our cell while we were there to say to immediatly stop the cyclosporine for a bit. Kidney functions were too high. IV would not flush. Dr. Rob admitted Brandon back to St. John's. again.

June 6th- still at St. John's trying to coordinate surgery to put new central line in. This time we are going with a port. Should be easier to take care of.

june 9TH-Surgery to implant port. Will need blood transfusion. Hopefully going home tonight..

Thats all I have in that notebook. I think I must have started the caring bridge website around then and was able to record everything there. Anyway, it was a rough road for a while but the lesson I learned (again. I swear I learn this lesson daily) was how incredibly blessed we are. Along with this journal, I found a mass card for our dear friend Nick. He passed away from Neuroblastoma. And again, I am confronted with the questions of why, why, why? Why the seeming randomness? Why do some kids get better and some kids don't?
Last time we were in clinic we ran into another friend, Elijah. Elijah had neroblastoma. Elijah got better. Elijah only comes to clinic for counts now every several months. My heart sings for him, and Brandon, and all the other kids who walked away from clinic better. But my heart breaks for Nick, and Madelyn and Lauren and Tuesday and all of the kids who didn't. And espicially for their Mommies. I do beleive that God is in control and I need to feel that this isn't all a roll of the dice. I know God has plans for each of us, but I can' t beleive this is the plan for anyone. Seriously, the hell that I just posted about looks like a cake walk to other families who have suffered with more worse prognosies and even uglier illnesses than Brandon's. Some friends would kill to ONLY go through what we went through.
Ahhh, life is confusing. But God is not confused. And he will make all things right. I know one day he will put Nick back into Kelly's arms and Tuesday back into Jess's arms. Waiting for that day...