I’m going to add in the previous email updates so that everyone can have the whole picture.
This email was sent Sunday, December 4th:
Greetings All –
Because you all have varying amounts of the story with Allistaire, I’m attempting here to tell the whole story up to this point…When in Bozeman back in late September/early October, Allistaire got a nasty cold that didn’t go away on it’s own. She was quite irritable and had poor appetite. Soon after we returned home, on 10/14, Allistaire saw her doctor and was given a 10 day round of antibiotics for a sinus infection and ear infection on one side. She took the antibiotics and seemed to improve for a short bit. However, the last few weeks she has been incredibly fussy all the time, extremely tired to the point that she has wanted to go back to sleep after an hour of being up for the day, and very resistant to eating – even the foods that in the past she has happily eaten. In addition, I began to think that she looked strange – her eyelids have become quite puffy, when I would put her in the car I noticed in the natural light that her lips looked gray and her overall skin tone looked yellow. This Tuesday I mentioned my concern about her color to the older ladies at Bible Study Fellowship who care for her and they affirmed they too thought she looked yellow. On Tuesday morning I had already made a doctor’s appointment for her for Friday hoping she might be better. I thought perhaps she was not quite over her sinus infection and might need some more antibiotics and at the same time she has been getting two new teeth that might also account for a great deal of her irritability. On Tuesday afternoon, one of the BSF ladies called of her own accord and told me that she and the other ladies had discussed Allistaire and all agreed she should really see a doctor right away. They had noticed she looked a bit yellow last week and thought she looked more so this week. I called the doctor’s office to see if I could get her in sooner but they had no more appointments that day and felt she could wait until her scheduled appointment on Friday.On Thursday morning I woke up determined to try to get Allistaire in right away. I called at 8am and was given a 9:20 appointment. As soon as our dear Dr. Tan-Jacobson saw Allistaire she affirmed that she was severely anemic and this was to account for her coloring and lethargy. The question was why. She said that somehow she was losing blood but that we had not visual evidence of it. It was possible that she was loosing it microscopically in her stool as a result of the virus she had affecting her GI track and kidneys. She said that her greater concern was that Allistaire might have Leukemia. We had her blood drawn and went home to await the results. Three hours later, Dr. Tan-Jacobson called to give us the good and bad news. Fortunately, the tests did not show any abnormalities in her blood cells in terms of their appearance. To use her words, they were “non-leukemic” looking. The concerning issue was however, that her blood counts were extremely low and she instructed us to go directly to the emergency room at Seattle Children’s hospital and that they would be expecting us. We gathered our things and Sten met us there.
In the emergency room Allistaire’s was given an IV and blood was drawn for more tests. The initial tests came back within an hour. Again there were no abnormal looking cells – Praise the Lord! Additionally, her numerous tummy-pushing exams showed no sign of an enlarged liver or spleen which can also be signs of Leukemia. Her blood levels were the most concerning and pressing issue. Allistaire’s hematocrit (the ratio of red blood cells to the whole quantity of blood) was 9.7 when it should normally be 30-40. Additionally her white bloods cells, platelets and neutrophils were also low. The pediatric HemOnc (Hematology/Oncology) team advised blood transfusions to get her to a stable point and the possibility of a bone marrow draw if necessary. Due to Allistaire’s very low blood levels, her heart has been working extra hard to pump what blood she has through her body. This has shown up in her increased heart rate of ~160 when it would normally be about 100. It is important for Allistaire to have sufficient blood and thus sufficient oxygen to get to all her organs so that they would not be damaged. At this point while leukemia is still a possibility the hope is that Allistaire is actually dealing with an odd phenomena where a young child’s bone marrow temporarily shuts down production, especially of red blood cells, in response to a virus. In this case, the bone marrow spontaneously “turns on” and starts production again. This can take anywhere from a few weeks to a few months. There is nothing that can be done to make it start producing but one’s body needs to be supported in the mean time. This condition is called, “Transient Erythroblastopenia of Childhood” or TEC for short.
We were discharged yesterday evening from children’s hospital after Allistaire received four small transfusions of blood. The first two transfusions she receieved through the night on Thrusday; each taking four hours. The purpose of giving Allistaire small amounts of blood over a long period of time was to not overwhelm her heart with a sudden increase of blood volume. They also wanted to look for any allergic reations to the blood. Allistaire tolerated everything very well and after the first transfusion she literally came alive – at 3 in the morning! She was up talking, standing in the crib, wanting to play and interact. They said the blood would perk her up but we had no idea! Four hours after the second transfusion, Allistaire had her blood tested again. Her hematocrit (red blood cell count) was up to 17.8, however, her white blood cells, platelets and neutrophils were again a bit lower. They then gave her two addtional transfusions. These were much quicker (only a little over an hour each) because her body could now handle more. Because Allistaire’s white blood cells, platelets and neutorphils are incredibly low, she is at risk for viral infection, significantly lessoned ability to clot blood and to fight deadly bacteria. These parts of the blood are either rarely or never transfused so we must wait for her own body to increase their production. In the mean time, we must take procautions to keep her well.
We are to return to Children’s Sunday morning and Tuesday morning for blood draws. The purpose of this is two get two more data points to see what pattern in imerging. Should her counts continue downward a bone marrow test will be necessary as will likely additional transfusions. If they are increasing we will probably have to just watch her and keep checking her blood levels periodically in hopes that her body will return to normal functioning. On Tuesday we will also meet with the doctor and get back some additional tests which are testing for various viruses she may have been exposed to which could have triggered the cessation of the bone marrow functioning. My understanding is that should she test positive for any of these it would give as another bit of confirmation that she has TEC, however a negative result does not necessarily give us anymore reason to think that it is not TEC because of the fact that there are many children who have had TEC but tested negative for these viruses.
*Okay- rather than take the time to retype I’ll just stick this newest update in here. Saturday morning when Allistaire finally woke up at 11am she had very puffy eyes once again (they had looked much more normal Friday night when we returned home from the hospital). The area of puffiness was reddish and she had little red spots on the skin around and near her right eye. We called the HemOnc Fellow on call who thought it could be pink eye but was also concerned that the red spots could be petechia which are tiny broken blood vessels and can occur when your platlets are low. We opted to try going to our local Urgent Care first and having the HemOnc Fellow brief their doctor. The Urgent Care doctor thought that there might be the beginnings of cellulitus (a bacterial infection of the skin) and that because Allistaire’s neutrophil count it so low (neutrophils are the part of our blood that fight bacteria), this would be much more serious than should it happen in someone with a normal functioning immune system. Because her whole immune system is so depleted, any defense her body might mount would look much less significant than what could really be going on. The Urgent Care doctor talked with the HemOnc Doctor on call who wanted us to come back to Children’s Emergency Room.
At Children’s a number of doctors examined Allistaire and her blood was drawn again to test her blood levels, test for presence of a protien which would indicate her immune system was fighting off an infection and a blood culture test to look for bacteria in her blood. The good news is that no one thought the spots on her face looked like petechia, no one thought she had cellulitus especiallyy because it was not at all painful to Allistaire and her results came back negative for the protien which shows there is no indication she is fighting an infection. Her hematocrit (red blood cell count) was 25 which is exactly where they expected it should be after the transfusion. Her white blood cell count was up a bit but her platlets and neutrophil counts had dropped. The HemOnc Doctor said that “orbital puffiness” – the puffiness around her eyes was typical after a tranfusion and that the numbers on her blood counts can go lots of ways after a transfusion. So while it is clear that her immune system is even more vulnerable, the doctors did not indicate greater concern about leukemia. On the other hand, the doctor did say that the very low neutrophil count may “have just bought her a bone marrow test.” We were discharged in time for Allistaire to come home eat dinner and go to bed. Throughout the day Allistaire was chipper, happy, playful and did a lot of spinning – a sign of her joy. She is joy upon joy to us!
So for those of you who like numbers and are interested, here are Allistaire’s counts thus far:
Normal 12/1 12/2 12/3
Hematocrit 30-40 9.6 17.8 25
Platlet Count 200 – 450 137 106 99
White Blood Cell 5 – 15 8.7 9.0 9.3
Neutrophil Over 1000 186 158 77
Because we were at the hopsital yesterday and had her blood drawn we will not be going this morning. Our next appointment will be Tuesday morning. Thank you for all your love and prayers! We feel very supported by you all. At the moment we are mostly just in need of your prayers for Allistaire, the wisdom of the doctors and for our own hearts in all this. We love you all very much and will keep you updated.