history3

Once at Homburg Clinic we were in more of a dizzy spell. First up was a new IV in Jordyn's arm. It had taken so many tries the night before to get the one in at Landstuhl we were terrified of the prospect of how many tries it would take this staff. It did take a few tries, but luckily much less than the night before. A big help in that was that she was hydrated and her vains were pumped full. Then the next issue was X-Rays. She needed X-Rays of her lungs, to check for fluid in them. She also had to have a EKG to look at her heart and an EEG, and they did a spinal tap to check for leukemia cells in her Central Nervous System (CNS)/spinal fluid. One those things were finished we were taken back up to her room and told that Dr. Graf would be in soon to talk to us. Dr. Graf came in and told us that Jordyn had developed pneumonia and that the leukemia had spilled out of her bone marrow and into her CNS also. We were not very surpised by the leukemia being her in CNS, because before Jordyn had been dx (days before) she had a large "bump" form on the temple of her right side....we found out this bump was actually what is called a Chloroma, which is a bunch of leukemia cells gathered and they had pushed out;it looked like a tumor in a medical thought process or a bump on the head in parents thought process! He told us that Jordyn would need to begin chemotherapy (chemo) immediately. She started that night, on protoccal: AML-BFM 98. The first chemotherapies would be: Ara-C and 6-thioguanine. She had those starting on March 25 to March 30 (her birthday). On March 30 she began ara-c,idarubicine, and VP-16 from March 30-April 7.

Jordyn continued chemo throughout April with breaks inbetween for her counts to raise back up. Once they had rebounded she would begin another round of chemo. During the chemo Jordyn did fairly well. It's not like what TV and the Movies make out, and if that is the only way you have ever experienced childhood cancer, you really don't know...Jordyn would normally wake up in a happy mood, even after being pumped with chemo all night long. She would have her blood drawn, most days it seemed the IV didn't work and she would have to get a new one. (They told us that she would be getting a Central Line/Broviach (tubies). It would be surgically placed in her chest. They would go in through the neck and push it through a vain and it would come out through her chest. This would save her from having to have IV's and being poked other than for Bone Marrow Asperates and Lumbar Punctures/Spinal Taps.) She would then eat breakfast, brushed her teeth, had a sponge bath, and started her day of play! Normally in that time she would get sick and 99% of the time the vomit landed right on me! So then I would begin my day of showering and getting dressed! Chad would normally get to the hospital by 10, most days and we would play with Jordyn, talk about her night, and just try to do something to keep our mind off the fact that our daughter REALLY had cancer. In the beginning Jordyn was allowed to go outside of her room, as long as her counts were up high enough. She would have to wear a surgical mask, but she knew to keep it on if she wanted to leave the room and she ALWAYS wanted to leave. We would go and play in the playroom, walk the halls, go outside. Outside was amazing. Homburg was in a university and was very large. It was really a beautiful place there, so we would walk around as long as possible. They had natural habitats set up one with Elk Deer and another with Wild Bores. Jordyn loved to go see both. The Bores were about a 2 mile walk and although they stunk beyond belief, we actually went there often because it made her happy and we got to keep her outside in the fresh air longer!!

On April 14, 1999, Jordyn had a spinal tap and bone marrow asperate to check where the leukemia was and how the chemo was effecting the leukemia. We got GREAT news. There were no signs of leukemia in her CNS! The cloroma was gone and we felt for the first time a large peace! Jordyn was really responding well to the chemotherapies. The night she was dx her WBC were 154.000,. because they had to give her the steriod for the croup it had made the leukemia jump up to 199,000 by the next morning. After just the first chemotherapy her wbc dropped to 34,550! This was very, very good news, it showed tht she was responding positively to the chemo: that is was KILLING the leukemia cells!! Everyday it seemed her WBC dropped, they NEVER went up!!

During this time we celebrated Jordyn's birthday. Our friends, JoAnn, Clarissa, and Kayla came up and shared cupcakes, McDonald's, and opeing presents! Jordyn was soo excited to see the girls! She had a very happy birthday and was actually free of any lines going into her, so she was not getting chemo! (they started chemo after the celebration). The staff had also got her a small gift and came and sang Happy Birthday to her! We passed cupcakes out to all of the children on the ward, and although most of them did not speak English, they all seemed VERY HAPPY to recieve the chocolate cupcakes!!

Jordyn grandparents also made plans to come over. Nana, Chad's mom, arrived a few days before my parents (Mamaw and Papaw). She was there for Easter. We dressed Jordyn in her Easter dress and I made a roast and pototoes and the works! Jordyn ate dinner really great! We gave her Easter baskets and she seemed to enjoy the day. On Easter she also had a special visitor, our friend Dave, who we had known since being stationed at Ft. Riley! She was able to leave her room that day also...so that made the day that much more special for Jordyn.

Mamaw and Papaw arrived, baring many gifts! They would have tea parties together and play. Dr. Graf would come in and she would play tea party with him too! There was something so beautiful about watching this doctor who is renowned in his field, sitting on the bed having "tea" with his little patient!

After many I.V's and a conference call between Dr. Graf, Dr. Mosijczuk, and us, the decision was made to put the Central line into Jordyn. This was a God Send! There were no more pokes and fights to get blood everymorning, because the iv had blown again or wasn't working correctly. On April 20, as Chad took his mom to the airport and the day after my parents went back to Kansas, Jordyn recieved her central line. It was surgery, but she did really well and when she came out, the central line was in! HURRAY!!!

On April 26, we got great news from Dr. Graf, Jordyn was in complete remission! There was no sign of leukemia cells in her bone marrow and her CNS had been clear for a couple weeks now. It was time to wait for her counts to come back up and then we would be flying to Walter Reed, in Washington, DC! Finally after many phone calls to Landstuhl to speak with Dr. Fuller and a couple calls to Walter Reed, it was time to go! I for the first time since Jordyn was diagnosed (dx) went home to lay out Jordyn and I's things for Chad to pack for us. I said "goodbye" to our home in Germany and went back to the hospital.

May 18, finally came and the day was here to leave. Jordyn and I would be flying together and Chad would follow about a week and a half behind us, he had to have all of our things packed and sent to the states. We said goodbye to the staff at Homburg that we had grown to love and the drs. We took a few more picture's of everyone and the ambulance arrived to take us over to Landstuhl to spend the night there and the next morning we would leave for Walter Reed. We were nervous and ready all in the same way. The next morning was pretty rushed and tearful. Jordyn and I were leaving Germany FOREVER and we were leaving Chad for a week and half. I would be meeting a new staff and trying to adjust to the differences between the German medical staff and the American medical staff and there was quite a difference in how they did procedures. In Germany we were not allowed to stay in the room when Jordyn was having a bone marrow biopsy or asperate or a L.P. done. I was soon to find out all was different in the U.S!

Jordyn and I got on the HUGE jet. It was more of a cargo jet. There was no insulation in the jet and it was EXTREMELY LOUD. Dr. Fuller was flying with us along with a very kind nurse. They were there in case a medical emergency was to pop up in the 15 hour flight. We got to Andrew's Airfoce Base and we waited for an ambulance. We got there just in time for RUSH HOUR. Something I had never experienced as a samll town Kansas girl! It took about an hour to get to Walter Reed from Andrew's and then we walked ito Walter Reed, our new "home away from home".