At long last a blog update.....Summer passed all too quickly and we have spent the past month squeezing in all the fun things in we can, Maggie's mission trip, the start of her cross country season, and getting Kate ready to go off to Malone College. Thus, updating the blog got pushed to the back burner.
KATE:
Children's called late Monday 8/18 afternoon with Kate's labs results from the previous Friday. You may recall her prolactin level was slightly elevated and the doctor wanted to recheck that level after Kate had been off the medication that may have been the cause of the elevation. Since we were doing lab work, I also requested that we check her other counts before she went off to college. Much to everyone's surprise her hemoglobin was a bit on the low side, so it was determined they needed us in the clinic Tuesday to get a retic count (how fast the body is making RBC's) and then type and cross match her for a probable transfusion of RBC as we didn't want her going to school on the low side. The lab news that concerned me, however, was that the prolactin level (which we hoped would have dropped after cutting out the medication) actually more than doubled. You may remember that I shared the doctor thought it could be caused by medication, but acknowledged it could be from tumor near the pituitary.
So Tuesday 8/19 we were off to Pittsburgh for a marathon day. We arrived at the clinic and they immediately got down to business. They put in an IV and drew Kate's blood for labs and then announced that we needed to head to the other hospital for an MRI. This was a surprise to us, but one we were very thankful for, as we did not think Dr. J would be able to get Kate an MRI with such short notice. This MRI was a focused study of the pituitary. It took only about an hour, a lot shorter than Kate's normal 2-3 hour scans. We then headed back up to Children's where they had 2 units of blood waiting for Kate's transfusion of RBC's. Finally about 4:30 as the blood transfusion was finishing, Dr. J came in to share with us the good news that Kate's MRI was fine. We were extremely relieved. She then went on to discuss the fact that Kate's symptoms remain a puzzle to her. First: in regards to the prolactin - since the medication suspected of elevating Kate's prolactin is not the culprit, and the MRI shows no tumor near the pituitary, the reason for the increasing prolactin level remains unknown. Dr. J feels now that this is out of her range of knowledge and expertise and she has Kate scheduled on September 12th to see someone in the endocrine dept. to see if they have some insight. Secondly, the drop in Kate's hemoglobin was also a puzzle, because her other counts (platelets and WBC's) remained strong. Typically when the bone marrow becomes depressed you will see a drop in all three types of blood cells manufactured in the bone marrow. Dr. J consulted with Kate's stem cell doctor and he ordered some blood tests to check for 4 types of viruses that may be seen in bone marrow/stem cell transplant patients that could possibly cause a drop in hemoglobin. Dr. J also order some other blood work to check vitamin levels, etc. Thursday 8/21 the hospital called to say that the results of those extra blood tests revealed that Kate has a vitamin B12 deficiency known as megaloblastic anemia. What this means is that Kate's red blood cells are large and fewer rather than normally small size and many in number. The bone marrow is compensating for its inability to make enough red blood cells by making larger ones, which aren't as efficient at their job and do not live as long as smaller red blood cells. So Friday 8/22 it was back to Children's, where Kate received the first of five B12 injections and we consulted with the gastro specialist. The reason that Kate's oncologist referred us to the gastric dept. is because this type of anemia is often a result of malabsorption of the B12 in the digestive process. One of the first moves of Dr. G, the gastric specialist was to wean Kate off of the medication she has been on for gastritis (stomach acidity). Studies of this medication have shown that it may interfere with the absorption of the B12. Some of the symptoms of megaloblastic anemia include: fatigue, muscle weakness, nausea, lack of appetite - all things that Kate wrestles with. We are hoping and praying to see some improvement with the injections. The gastro specialist ordered a bunch of extra blood work and scheduled a EGD (stomach scope) for Friday 8/29. Kate has had an EGD before, so this was pretty low stress. The doctor took multiple biopsies as she went but based on the pictures she share with me, doesn't expect any issues like infection to show up on the biopsies. She did however, have back the results of some of Kate's blood work and has found that B12 problem may be a result of issues with the intrinsic factor. Dr. G explained this to me the best she could and then my dear friend Teresa, who is a nurse, helped me put it in laymen's terms. Basically, the intrinsic factor functions as a basket carrying the B12 around the body suppling the cells with B12. In Kate's case there is an anitbody blocking the work of the intrinsic factor, thus the B12 is not getting disbributed or absorbed by Kate's body. Dr. G told me she has never had a patient with this,and she herself is going to have to do further research and that we could probably expect more tests for Kate to get to the bottom of this issue.
In light of the anemia diagnosis we discussed at length Kate's start of college. Dr. J knows Kate's personality well and while she is concerned that Kate may push herself too much, but she supports Kate going, understanding that sometimes engaging the mind in something else takes the focus off of feeling bad physically. She encouraged Kate to do what her heart was telling her. Kate and I prayed together about this and she determined to give it a try. Kate and I both have some concerns and are a bit anxious about her making this big step, given how she is feeling, but as we have navigated this journey we know that we just have to take one day at time.
So last Wednesday 8/20 it was off to Malone College in Canton, Ohio. My parents accompanied us so that we could get everything in Dad's truck and my car and then Mom and Dad departed after lunch to get Maggie back for her own orientation to the high school. During her time on Malone's campus, Maggie was delighted when several people mistook her for a college student. We all worked together and got Kate completely settled in and set up. I didn't want her to have anything else to do to tax her strength. Kate and I went to our various parent/students mtgs. throughout the afternoon. Late afternoon the students were walking back to the chapel to meet back up with the parents. Kate took a shortcut with the students near some side walk renovation where the ground was uneven, she lost her balance and fell, taking a hard hit to her head on the pavement. The health center checked her out and she seemed fine, but had a good bump and slight headache. We called her oncologist to touch base and she asked that we go to an ER in Canton and get a CT scan to be sure that there was no hematoma (bleeding). So we spent almost 4 hours in ER and were glad the CT scan was fine. While Kate's first day at Malone was not all that we hoped and prayed that it would be, we know that God is carrying her every step of the way and will lift her over this latest hurdle.
Kate's transition has been rough. Not feeling well, has done nothing to help the separation from Maggie and me and feeling homesick. She began classes this past Monday and has been positive about each class and professor. The Malone's support services department has been wonderful! They rented a scooter for Kate so she can get around a little easier until her legs get stronger. I told her not to run anyone over:)
Thank you for praying Kate through another hurdle in the journey. Please pray for her in these early days of transition to college life asking for renewed energy and strength and the opportunity to really connect with some people and start building some friendships. Medically, we are thrilled to have some answers about what is not the cause of Kate's symptoms, but please ask for wisdom for the doctors as they continue to work at solving the puzzles related to Kate's health.
MAGGIE
Maggie's summer has been her usual flurry of activity. Cross country practice began soon after school ended. She has amazed me with her love of running and dedication to pull herself out of bed early in the morning (she loves to sleep in) to train and get in shape. We are so thankful that her exercise induced asthma, which is being maintained only with daily inhaler doses, does not hinder her from running five or more miles with relative ease. My admiration for her stamina and determination has grown with each race I have watched her run.
One of highlights of Maggie's summer was her mission trip to Tennessee. She loved this experience and the team leaders shared with me their praises of her enthusiasm and tireless efforts and servant heart. She worked part of her week on projects at a family's home where she quickly bonded with the little girls in that family who were delighted with the special love, time and attention Maggie focused on them. The other part of Maggie's week was spent working in a store house that provided used clothing and household essentials for those in need. While these items were available primarily for those locally, the team helped pack up the excess clothing for shipping overseas to third world countries.
Maggie experienced an unexpected thrill when her friend received free tickets for the Jonas Brothers concert this past Tuesday night. The girls' were excited to say the least. Kudos to Molly's Dad for enduring a long, loud evening of music and teenage girls screaming their enthusiasm through the concert.
School began this past Wednesday for Maggie. Her transition to the high school has been smooth. It's been fun to listen to her stories told with her usual dramatic flair about her first days in the high school:) Maggie and I had fun Thursday night working making and selling funnel cakes at our church's booth at the local fair. This fund raiser allows the youth to begin earning money towards next summer's camp. Ballet begins next week. Friday was the first football game of the season, still another social event on Maggie's long list of activities.
MOM
As for me, the summer was full of special blessings of visits with friends, good times and busy days with the girls, and tutoring. I will continue to substitute teach and tutor this fall, as this gives me the most flexibility given that we are addressing these latest health issues with Kate. Right now it is necessary to make more frequent trips back and forth to Malone for Kate, so that we can get her to these various appointments at Children's. I have been so thankful for the support and help of family and friends with logistics. My dear Mom and Dad have made a couple of the trips to Malone to pick up Kate, so that I could remain at home to be a part of some of Maggie's activities and events. Other friends have graciously provided rides for Maggie, when I have been at appointments with Kate. My heart has been particularly blessed watching the tender love and care of Kate and Maggie for each other. Maggie was real servant in helping get Kate packed and then moved into school. She has been a great cheerleader to Kate in these early days of transitioning to college, not feeling the best and missing home. Kate's sensitive heart reached out to Maggie as well, as she wrote Maggie a special email before her first day in high school and called that evening to hear all bout her day. I really had to smile when Kate lovingly agreed to bring home a couple pieces of her clothing that Maggie wanted to borrow. Now that's sisterly love!!!
We remain thankful for your encouragement, love and prayers. How blessed we are to have you walk beside us!
